Friday, August 18, 2017

Health Caring Post-Charlottesville?

By: Mike Magee, M.D., Health Commentary

Photo of Dr. Mike Magee
Dr. Mike Magee
Collectively health professionals have a unique role in American society. Across cities and counties, rural and urban, we are asked to be available and accessible to help keep people well and respond when they are sick or injured. Those wounds come in all shapes and sizes – wounds to the body, wounds to the mind, wounds to the spirit. As important as are our diagnostic and therapeutic interventions to society, they pale in comparison to a larger, often over-looked function. Together, collectively, we process day to day, hour to hour, the fears and worries of our people, and in performing this function, create a more stable, more secure, more accepting and more loving nation.

With Charlottesville etched in the American psyche, good-willed Americans are in search of our true center. As a physician, I recall patients whose goodness and courage and kindness brought out the best in me and my colleagues. That after all is the true privilege and reward for doctors and nurses and all health professionals – the right to care.

Nearly six years ago, my wife and I were blessed with the arrival of our eighth and ninth grandchildren – two little girls, Charlotte and Luca. We were also introduced, for the first time as health consumers, to the Neonatal Intensive Care Unit (NICU). The girls came early, at 34 weeks, and struggled to work their way back up to their due date. They are doing great today, but in those early days, it wasn’t easy on them or their parents or the care teams committed to their well being.
Viewing them from my grandparent perch, the Connecticut Children’s Hospital Center NICU team at Hartford Hospital did a great job, balancing high tech with high touch, providing wisdom and reassurance, inclusion and training to the girls’ parents, who were inclusively inducted as part of the team on day one. Viewing it all from my vantage point as a former surgeon, hospital administrator and health policy analyst, I was impressed, but not surprised.

When people claim that “America has the best health care,” they’re usually referencing groups of highly skilled doctors and nurses and other caring professionals, committed to their patients and to each other, armed with experience, judgment and technology to – collectively – heal and provide health, and keep us whole in the process. It’s really a holy thing to observe.

What that NICU experience illustrates is that we health professionals are fully capable of collaborative and humanistic care, especially when faced with a complex crisis. But the challenge today, in the face of purposeful Presidential segregation of our citizenry, is to extend the same blend of knowledge, skill, compassion and partnership to all patients on a day-to-day basis. How do we assist them in creating healthy homes, healthy families and healthy communities?

If you deconstruct the success factors embedded in our NICU experience, what do you find, independent of the scientific skills, sophisticated technology and ultra-focus on the patient?

There are three elements that are worthy of note.

  1. Inclusion: For most humans, the first instinct when faced with trauma or threat is flight. And yet, these NICU professionals’ first instinct was inclusion. With IVs running, and still groggy from her C-section, our daughter and her husband were wheeled to the NICU and introduced to their 3 lb. daughters. They were shown how to wash their hands carefully, how to hold the babies safely and without fear, and – while given no guarantees – experienced the transfer of confidence from the loving and capable caring professionals to them. Those were remarkable first day gifts to this young couple.
  2. Knowledge: Coincident with the compassionate introduction to their daughters, there was a seamless transfer of information – each of their daughter’s current conditions, an explanation of the machines and their purposes, the potential threats that were being actively managed, and the likely chance of an excellent outcome. This knowledge – clear, concise, unvarnished, understandable – delivered softly, calmly, and compassionately, reinforced these young and fearful parents’ confidence and trust in each other, and in their care team, on whose performance their newborn daughters’ lives now depended.
  3. Accessibility: Clearly a NICU is a 24/7 operation. But that alone did not assure that the needs of these patients and their family would be met. First, members of their care team needed to demonstrate “presence.” By this I mean, by communication, touch, voice, and face, they needed to connect to the parents, to signal that they cared for these unique individuals. The outreach needed to be “personal.” This was not a rote exercise for them, not just another set of parents, not just another set of tiny babies. These were these specific parents’ precious children, their lives, their futures were now in the balance. And the performance needed to be “professional.” The team needed to be consistent and collaborative, with systems and processes in place, no descent and little variability in performance, rapid response, anticipatory diagnostics and confident timely management of issues as they arose.

As we recover as a nation from Charlottesville and Trump’s self-inflicted wounds, we caring health professionals need to mirror a better way – holistic and inclusive, humanistic and scientific, where goodness and fairness reside side-by-side. How might each of us actively demonstrate a commitment to inclusion, knowledge transfer and accessibility, and in doing so, assure that our patients respond with confidence and trust in America?

**Reprinted with permission

Read Dr. Mike Magee's blog online, "POST-CHARLOTTESVILLE – WE NEED CARING HEALTH PROFESSIONALS MORE THAN EVER!"

Friday, August 11, 2017

Drug Importation Policy is a Hard Pill to Swallow

By: Brandon M. Macsata, CEO, ADAP Advocacy Association

When I first heard the news that Congress was considering legislation that would allow prescription drugs to be imported from abroad, I was honestly quite shocked. I know firsthand how such policy can negatively impact consumers who decide to purchase drugs from abroad. The potential consequences are quite daunting.

In 2002 (just shy of my 30th birthday), I was diagnosed with HIV. When my doctor told me the news, a hundred questions came to mind all at once. What was my long-term prognosis? What types of medications would I have to take? Who could I turn to with my questions about life with HIV?


(Editor's Note: The photo of me was taken in 2002 on Easter Sunday during the time that I was importing my HIV medications. At the time, I was still quite sick after experiencing my acute seroconversion. In fact, in this photo my two best friends are literally helping me stand up, and they made me look "presentable" with some make-up. The benefits of rooming with two wonderful women who took care of me.)

What happened next directly shaped my viewpoint of the dangers associated with importation.

I ordered medications from an online Canadian pharmacy. To this day, I have no way of knowing where the drugs were made or if they contained the active ingredients I needed to effectively treat my condition.

At the time, I opted not to consult my physician in the process. Due to my insurance coverage, my out-of-pocket cost was $1,300 during the second month of treatment. For two months, I received medications via mail from Canada. Honestly, I didn’t even entertain the idea of whether the medicines were real or fake.

Fortunately, my doctor intervened and advised me of the reality of what I was doing. She told me that drugs purchased through online channels are often counterfeit and most likely do not contain any ingredients that help patients. In many cases, the ingredients can be deadly. Without even knowing it, I was rolling the dice with my health and safety. It was an eye opening intervention and one that too few patients ever experience before irreparable damage has been done.

Without question, we need to address the issue of rising health care costs in the United States, which greatly contributes to patients buying medicines online. However, legalizing importation isn’t the solution we need. It will undoubtedly lead more patients to risk their health and, ultimately, their lives through online drug purchases.

Consider the following: The World Health Organization estimates that 10 percent of medicines across the world are fake. In some parts of the world, this number is as high as 30 percent. In 2015, Interpol confiscated nearly 21 million fake medicines, a significant increase over the previous year.

As a society, why would we take our guard down when the threat is so high? As someone who is informed on health care issues (even at the time of my diagnosis), my search for Canadian pharmacies did little to warn me against the dangers. I had little knowledge or available information when I ordered medications from Canada.

Rather than open the floodgates to unregulated medicines, we should be doing more to ensure the safety and integrity of our drug supply. Last month, former FBI Director Louis Freeh released a report highlighting the incentives that drug importation would create for criminals who are actively marketing to consumers in the U.S. and the burden it would place on law enforcement who protect our drug supply.

Among his recommendations to be proactive on the issue, Mr. Freeh urges policymakers to conduct a detailed assessment of law enforcement’s readiness and ability to get in front of the threat that exists. I completely agree with Mr. Freeh - this should be our focus.

As we strengthen our defenses, we must also prioritize patient education and engagement initiatives to ensure that we’re deterring importation from the moment of diagnosis. The reality is that a number of online pharmacies with a Canadian flag attached to them are merely front doors for smugglers operating in countries across the globe.

There are viable ideas to combat the rising cost of healthcare – including prescription medications – but importation is not one of them.

Over the past two decades, we’ve made significant progress against HIV/AIDS. Today, there are medications available that we didn’t have just a few years ago. In fact, recent studies have shown that people in North America and Europe who are infected with HIV and who begin treatment with a triple-drug cocktail can expect to live nearly as long as people who aren’t infected by the virus.

Having lived with HIV for nearly 15 years, I know how important medicine is in achieving a sense of normalcy again. If we embrace drug importation, we’re sending a signal to patients across the country that their health and safety don’t matter. Lawmakers should not be playing a game of chance when patient lives hang in the balance.

This opinion piece was also published in the August 11th edition of the Washington Blade.

Friday, July 28, 2017

ADAP Leadership Award Honorees Help Navigate "Unchartered Water"

By: Brandon M. Macsata, CEO, ADAP Advocacy Association

Yesterday, honorees of the 2016-2017 ADAP Leadership Awards were announced by the ADAP Advocacy Association (aaa+®). The awards recognize individual, community, government and corporate leaders who are working to improve access to care and treatment for people living with HIV/AIDS  including the AIDS Drug Assistance Program (ADAP). This year's honorees reflect the organization’s conference theme, "Unchartered Water: AIDS Drug Assistance Programs in the Age of Trump."

The timing yesterday of the awards announcement was only fitting, as three Republican Senators joined all 48 Senate Democrats to kill the so-called "skinny bill" designed to repeal the Affordable Care Act (aka, Obamacare). So far this year, ADAP stakeholders — and many others — have been consumed by the uncertainty over the future of the ACA and the protections afforded to people living with HIV/AIDS. Whereas the "Age of Trump" is still unfolding, ACA repeal threatened the care for thousands of people living with HIV/AIDS either through ADAP premium assistance, Medicaid expansion, or ACA marketplace subsidies. That uncertainty has abated, at least for the short term.

Within the HIV/AIDS advocacy community, we are fortunate to be surrounded by so many inspirational leaders. They, too, serve as a reminder about the daily challenges faced by people living with HIV/AIDS, and yet how it is possible to overcome them. That is why it is important to reflect on the accomplishments achieved by individual, community, government and corporate leaders working to improve access to care and treatment for HIV/AIDS.

aaa+ Leadership Awards

The awards will be presented to this year's honorees during the 7th Annual ADAP Leadership Awards Dinner, which is being held in Washington, DC on Saturday, September 23rd. The following leaders will be honored:
  • Lifetime Achievement (individual): Paul Arons, MD & Paulette Heath
  • Champion of the Year (individual): Britten Pund, Director, Health Care Access, National Alliance of State & Territorial AIDS Directors (NASTAD)
  • Emerging Leader of the Year (individual): Khadijah Abdullah, Founder, RAHMA and Muslim Nannies
  • Corporate Partner of the Year: ViiV Healthcare
  • Community Organization of the Year: The Resource Group, Inc., Houston, TX
  • Lawmaker of the Year: The Honorable Marilyn Avila, General Assemblywoman (N.C.) & The Honorable Scott Wiener, State Senator (Calif.)
  • Social Media Campaign of the Year: Pozitively Dee Discussions, by Davina Conner
  • Grassroots Campaign of the Year: Network Empowerment Project (NEP) by SERO Project
  • Media Story of the Year: “America’s Hidden H.I.V. Epidemic” by Linda Villarosa, published in the New York Times on 06/06/17
Lifetime Achievement Award

Only the third time this award is being presented, it is being bestowed on two individuals who dedicated much their professional careers fighting the disease. Both are now retired.

Dr. Paul Arons has been advocating for people living with HIV/AIDS for several decades, never wavering in his commitment to promoting access to affordable care and treatment. He served as the medical director for the Florida Department of Health AIDS Program, where that state ADAP resides.  Paul remains involved in national advocacy, working with numerous national organizations. He continues to provide consulting to the Florida ADAP, and other regional and national organizations interested in ensuring optimal access to care and treatment for people living with HIV and Viral Hepatitis. Even in his retirement, Paul routinely reaches out to key stakeholders in the community to keep stakeholders updated on potential threats to safety net programs, such as Ryan White, ADAP, and Medicaid.

Paulette Heath was been a leader in the pharmaceutical industry at forging relationships with patient groups. During her tenure at Janssen Therapeutics, she continually sought input from community stakeholders, including hosting meetings in Washington, DC. Paulette ensured that Janssen Therapeutics was an informed industry partner, whether it through funding projects and events, sharing information about ADAPs, or promoting cross collaboration with other stakeholders. There was rarely an ADAP-related event whereby Paulette was not present, thus further demonstrating her commitment to improving access to care and treatment.

Champion Award

The ADAP Champion is the organization's oldest award, pre-dating the Annual ADAP Leadership Awards — which started in 2010. This year's award represents an important milestone, because it is the 10th time it is awarded.

Britten Pund has for many years been instrumental in advocating for people living with HIV/AIDS, and providing data to support the efforts of countless community organizations. Unrelenting in her mission, Britten works daily to ensure patients have access to ADAP resources, and professionally manages communications between pharmaceutical companies, AIDS Service Organizations, state agencies, healthcare providers, and others always keeping people living with HIV/AIDS as the top priority. For many years, Britten has helped to produce the ADAP monitor report annually for NASTAD. This data has broad value and reach contributing to ADAP decisions at the federal level, and state general assemblies across the country. She has presented at the Annual ADAP Conference for each of the last six years, and is expected to participate again this year.

Emerging Leader Award

Khadijah Abdullah started RAHMA, which addresses HIV/AIDS primarily in the American Muslim community. At the same time, RAHMA does not turn anyone away regardless of religious beliefs. According to RAHMA's website, "Rahma is the Arabic word for mercy. It is important to have mercy and compassion when supporting those living with HIV and spearheading educational efforts." In a very short period of time, Khadijah has positioned herself as a leading voice for an important marginalized community and achieving some pretty significant milestones. She has raised awareness about the important role Faith plays in the holistic continuum of care for many people living with HIV/AIDS.

Corporate Partner Award

ViiV Healthcare has launched numerous targeted projects, including community-led responses in resource limited settings and hostile environments for MSM and transgender people; its ACCELERATE! Initiative  which amplifies the voices of black gay men living with or affected by HIV; and its initiative on Closing the Gap in the Latinx Community. Additionally, ViiV's Positive Action Southern Initiative supports all populations living with HIV/AIDS in the South, it prioritizes support for the most impacted populations — including LGBTQ communities, youth, elderly, rural populations, formerly incarcerated, sex workers, and injection drug users.

Community Organization Award

The mission of The Resource Group, Inc. is to maximize all possible medical, psychosocial and educational resources to help persons affected by or at risk of HIV/AIDS with a primary focus in Northeast, Deep East and Southeast Texas. In September 2016, the Texas Department of State Health Services awarded funding to The Resource Group. Inc. to help improve the ADAP applications process by implementing ADAP workers at Ryan White agencies throughout Texas. As the only non-profit Ryan White Part B grant administration agency in Texas, we developed a system to implement, train and monitor the ADAP workers in a 51 county region, which includes rural East Texas and Houston.

Lawmaker Award

Former Representative Marilyn Avila served in the North Carolina House of Representatives from 2007 - 2016 representing Wake County, and served as a chair of the Health and Human Services Appropriations Committee. As a chair, she paid special attention to the budget for the NC AIDS Drug Assistance Program, and was committed to maintaining full funding for the program to guarantee all eligible individuals could receive medication. In 2016, she championed an effort supported by NC AIDS Action Network to expand access to care for ADAP to secure premium assistance for patients. Rep. Avila has also supported efforts to move North Carolina toward legalizing syringe exchange programs. In 2015, she was a lead sponsor on a bill to pilot used needle deposit sites, which was approved and paved the way for full needle exchange approval in 2016.

State Senator Scott Wiener was a vocal critic of the California Department of Health’s debacle over the state AIDS Drug Assistance Program contract, which resulted in interrupted treatment for clients, as well as possible data breach of client information. He commented, “I understand that the ADAP system is currently offline for an indefinite amount of time due to potential security breaches. Not only am I extremely concerned that personal information of ADAP clients may have been compromised, but also that the entire ADAP system is down during the height of open enrollment. Frankly, I am astounded that these system issues have yet to be resolved and continue to arise six months into the transition.” Senator Wiener was relentless in asking the tough questions that eventually led to the California DOH reversing course when it was evident that people living with HIV/AIDS were falling through the cracks.

Social Media Campaign Award

Pozitively Dee Discussions is a podcast hosted by Davina "Dee" Conner. Positively Dee Discussions promoted the Red Bow Tie campaign, in support of Heterosexual Men's HIV Awareness day on August 16th. It is aimed at supporting straight men with HIV, their needs, and the necessity create circles where straight men can connect and feel comfortable sharing their status. Creating that support helps straight men break through stigma and seek care that will protect their sexual health and their partner's sexual health. The podcast also collaborated with Rev. William Francis of the William Francis Ministries and Campaign Zero in Atlanta to promote the Red Bow Tie campaign on Heterosexual Men's HIV Awareness Day.

Grassroots Campaign Award

The Network Empowerment Project (NEP) was created by the Sero Project to facilitate the creation and strengthening of networks of people living with HIV (PLHIV) networks, whether the networks are focused on advocacy, education, recreation, provision of services or for mutual social support. NEP's goal is to support all such networks and make sure that those living with HIV who are newly-diagnosed are provided the opportunity to connect with the network(s) that can be most helpful to them in navigating the stigma, isolation, fear, loneliness, complicated treatment decision making and healthcare access issues and more.

Media Story Award

Authored by Linda Villarosa, "America’s Hidden H.I.V. Epidemic" highlighted why America’s black gay and bisexual men have a higher H.I.V. rate than any country in the world. It was published in the New York Times on June 6, 2017. The article was widely hailed as long-overdue, sounding the alarm over the disproportionate impact HIV/AIDS is having on this marginalized community.

Information about the awards is listed online at www.adapadvocacyassociation.org/awards.html.

Tickets to attend the awards dinner can be purchased online.

Thursday, July 20, 2017

HIV Medication Adherence: Supporting Successful Treatment Strategies

By: Brandon M. Macsata, CEO, ADAP Advocacy Association

Sticking firmly to an HIV medication regiment is probably the single most important thing people living with HIV/AIDS (hereafter referred to as patients) can do to help themselves remain healthy with an undetectable viral load. AIDSinfo explains why: "Adherence to an HIV regimen gives HIV medicines the chance to do their job: to prevent HIV from multiplying and destroying the immune system. HIV medicines help people with HIV live longer, healthier lives. HIV medicines also reduce the risk of HIV transmission."[1] Numerous strategies exist to promote better medication adherence to combat HIV/AIDS, with varying degrees of success.

Generally speaking about all health-related conditions, non-adherence results in additional healthcare costs, more hospital admissions, and approximately 125,000 deaths annually. Cost is often identified as the biggest barrier to better medication adherence.[2] Other barriers certainly exist.

Pill counter and pill bottle demonstrating importance of adherence

Pharmacists on are the front lines in promoting medication adherence to their patients. According to the American Association of Colleges of Pharmacy (AACP), "Pharmacists practice in nearly all areas and specialties in healthcare – sometimes behind the scenes and not obvious to the public eye, but as the medication expert on the healthcare team, pharmacists are necessary in all facets of healthcare."[3]

For example, Walgreens uses local, patient-centric model with 3,000 ACPE-trained pharmacists (Accreditation Council for Pharmacy Education), as well as HIV-specialized pharmacies in high-incident areas nationwide. To improve medication adherence, pharmacists provide approved culturally competent adherence support through monthly reminders and follow ups.[4] The direct interaction with patients serves as an important tool to promote HIV medication adherence.

A project in the Netherlands trained 21 nurses to work with patients on self-management of their HIV medication regiment, and the project yielded some promising results. The Adherence-Improving Self-Management Strategy (AIMS) approach included the nurses sharing important information about adherence with patients; setting adherence goals; utilizing electronic medication bottle caps; and intensive follow-up with the patients during scheduled office visits.[5]

Read a summary on AIMS and its potential for improving HIV medication adherence.

A commitment contract between the patient and healthcare provider can improve HIV medication adherence and virologic suppression, according to a recent study. In some cases, cash incentives were offered during the clinical trial. The study, conducted at a publicly-funded HIV clinic in Atlanta, Georgia, demonstrated the most adherent patients entered into "a commitment contract that made the payment conditional on both attending the provider visit and meeting an ART adherence threshold." These patients were more adherent than patients who had received cash incentives, or the passive control arm of the study.[6]

Read a summary on Commitment Contracts.

One of the most effective strategies for patients, especially considering today's technology, is downloading a free calendar reminder Application. Reminder Apps can be downloaded from the Internet or from numerous other places, such as iTunes, Google Play, Microsoft Store, etc. In fact, Healthline published a useful review on this very topic last year in, "The Best HIV/AIDS Apps of 2016."[7]

Other strategies include daily/weekly pill boxes, pre-packaged medications, patient support groups, fixed dose once-daily anti-retrovirals, just to name a few. Since every patient is different it is important to consider treatment strategies that reflect the needs of the patient.

Whereas numerous barriers can make following an HIV medication regiment difficult  such as cost, complexity of treatment,  missed appointments  there exist a plethora of options designed to support successful treatment strategies. Like any chronic condition, medication adherence for people living with HIV/AIDS is important. It prevents patients from developing drug resistance and treatment failure, it prevents unnecessary hospital admissions, and it prevents higher healthcare costs.


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[1] AIDSinfo (2017, July 17); National Institutes of Health; HIV Medication Adherence; U.S. Department of Health & Human Services. Retrieved from https://aidsinfo.nih.gov/understanding-hiv-aids/fact-sheets/21/54/hiv-medication-adherence.
[2] CVS Health News (2017); Cost is the Biggest Barrier to Medication Adherence; CVS Health. Retrieved from https://cvshealth.com/thought-leadership/cvs-health-research-institute/cost-biggest-barrier-medication-adherence.
[3] PHARMCAS (2017); Role of a Pharmacist; American Association of Colleges of Pharmacy (AACP). Retrieved from http://www.pharmcas.org/preparing-to-apply/about-pharmacy/role-of-a-pharmacist/.
[4] Hou, J., Kirkham, H., Pietrandoni, G., & Delpino, A. (2016, August 23 – 26). Patient adherence to antiretroviral medications among patients using HIV- Specialized pharmacy and traditional pharmacy settings. Paper presented at the 2016 National Ryan White Conference on HIV Care and Treatment, Washington, DC.
[5] Jungwirth, Barbara (2017, May 17); A Nurse-Led Adherence Strategy Improves Life for People With HIV and Saves Money; TheBody.com. Retrieved from http://www.thebody.com/content/79916/a-nurse-led-adherence-strategy-improves-life-for-p.html?ic=700100&sp_rid=NjI5OTAwMTAxMTMS1&sp_mid=11051078.
[6] Alsan, Marcella, et al. (2017, July); AIDS; A commitment contract to achieve virologic suppression in poorly adherent patients with HIV/AIDS; International AIDS Society Journal. Retrieved from http://journals.lww.com/aidsonline/Citation/2017/07310/A_commitment_contract_to_achieve_virologic.15.aspx.
[7] Carey, Elea, and Jared Fields (2016, June 13); The Best HIV/AIDS Apps of 2016; Healthline. Retrieved from http://www.healthline.com/health/hiv-aids/top-iphone-android-apps#1.

Thursday, July 13, 2017

Linkages to Care - Transgender Healthcare: Removing Barriers to Healthy Cultural Expectations

By: Jen Laws, Board Member, ADAP Advocacy Association, and HIV/transgender health advocate

A regular discussion of efficacy in HIV programming is the distinction between “quality” vs “quantity” metrics of “success.” Personally, I find this distinction to be short sighted and even harmful. Then again, I’m a transgender man that witnesses the word-of-mouth requests for referrals within this highly marginalized community. These requests most often occur after a trans or gender non-conforming person has run into an issue with their current provider or a person in the provider’s office, be it staff or other clients. “Quality” of service directly impacts patient retention and health outcomes; otherwise often considered “quantity” metrics of success.

Those issues can include being called the wrong name, verbal or physical harassment, and having to inform your own medical provider about your specific health care needs.[1] We go to our doctors because they’re supposed to be safe, they’re supposed to know things we don’t know. And these “issues” aren’t isolated to medical providers, transgender people often face unconscious bias or harassment when seeking assistance and social services, again from our peers and from staff.[2]

Some of these issues were recently outlined in an infographic published by the ADAP Advocacy Association. Download the infographic.

Infographic

When we can’t trust our providers, our case managers as our advocates, or the environment in which we’re supposed to engage them to be safe, we will opt for our own immediate safety over our long(er) term health needs. This is a large part of why those community based, word-of-mouth referrals mean so much to transgender communities: we need to feel and be safe in a world that is often threatening and dangerous.

The World Professional Association for Transgender Health (WPATH) has worked consistently and continuously to create a guideline for providers in transgender care to combat the barriers clients face, updating standards regularly to be more culturally competent. However, that doesn’t provide information to clients on where to go that is safe. That lack of centralized, reliable information is part of why RAD Remedy began building a community based referral database.

With transgender people experiencing lack of legal protections in employment, housing, and medical care and transgender women facing an HIV prevalence rate almost 50 TIMES higher than the general population,[3] the combined situation of lack of resources and heightened risk creates an environment of critical necessity of trans competency among HIV service providers.

Despite the focus on received medical care in these statistics, our social workers are our greatest allies and advocates in seeking the help we need, when we need it. Case managers have the opportunity to reach transgender people living with HIV at the moment dropping out of care becomes something a client has to consider. Peer advocates have the chance to help us change our stories when running into barriers that feel insurmountable.

In so many ways, big and small, our social workers are our life lines when they’re on our side, when we feel seen, and when we know we can trust them to have our backs.

In an effort to raise awareness about transgender health for people living with HIV/AIDS and/or viral hepatitis, we will host an educational training webinar on July 26, 2017. The webinar, "Transgender Healthcare: Removing Barriers to Healthy Cultural Expectations," will provide an introduction to systemic social and policy barriers that separate trans and gender diverse individuals from effective, culturally competent medical and mental health services that they need. Topics include multifaceted meanings of gender terms, defamatory stereotypes that impact trans health and access to care, and current and emerging issues in diagnostic, medical, and public policy.

Registration is open to all stakeholders. Registration is complimentary for PASWHA members, and it is also complimentary for patients living with HIV/AIDS. Use this scholarship link if you are a patient living with HIV/AIDS applying for a webinar scholarship.

Additional information about the webinar is available online at https://www.123signup.com/event?id=nhjqn.

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[1] Grant, J. M., Mottet, L, A., Tanis, J. (with Herman, J. L., Harrison, J., & Keisling, M.) (October 2010); National transgender discrimination survey report on health and health care; Findings of a Study by the National Center for Transgender Equality and the National Gay and Lesbian Task Force. Retrieved from http://www.thetaskforce.org/static_html/downloads/resources_and_tools/ntds_report_on_health.pdf
[2] National Center for Transgender Equality (2016); The report of the 2015 U.S. transgender survey; National LGBTQ Task Force and the National Center for Transgender Equality. Retrieved from http://www.ustranssurvey.org/report
[3] Centers for Disease Control and Prevention (2016); HIV among transgender people. Retrieved from https://www.cdc.gov/hiv/group/gender/transgender/

Thursday, June 29, 2017

Promoting & Protecting the AIDS Drug Assistance Program

By: Brandon M. Macsata, CEO, ADAP Advocacy Association

aaa+ ADAP Advocacy Association - Celebrating 10 Years - Promoting & Protecting the AIDS Drug Assistance Program
July 2007 officially marked the birth of the ADAP Advocacy Association, when a small Steering Committee filed the non-profit Articles of Incorporation in the District of Columbia and applied for its 501(c)(3) tax-exempt status with the Internal Revenue Service (which would be granted five months later). For a decade, we have been "promoting and protecting the AIDS Drug Assistance Program" (ADAP).

None of it would have happened without the steady guidance from D. Ben Tesdahl, attorney for Powers, Pyles, Sutter & Verville (PPSV)  who provided his services pro bono, and as such would receive our very first ADAP Champion Award the following year in 2008! "Steady guidance" because along the way in obtaining our registered trademark, we bumped heads with the Automobile Association of America and Blue Cross Blue Shield (...it's a very long story). Thank you, Ben!

Earlier this year, we posted about our "10 Years of Accomplishment, Advocacy & Access to Care" to recap some important milestones attained throughout our organization's history. None of these accomplishments would have happened without the tireless commitment and leadership from the individuals who have served on our Board of Directors since July 2007.

As we unveil our anniversary logo celebrating 10 years of providing the patient voice for people living with HIV/AIDS who rely on ADAP, we also dedicate this blog post to these twenty-five wonderful individuals. It is our way of saying "thank you" for their service! Our board members have included:
  • James Albino, 2008 to 2009
  • Michelle Anderson, 2009 to present
  • William E. Arnold, 2007 to present
  • Aaron Baldwin, 2014 to 2015
  • Robert Breining, 2010 to 2015
  • Wanda Brendle-Moss, RN, 2015 to present
  • Janine Brignola, 2011 to 2016
  • Elmer R. Cerano, 2008 to present
  • Crosby Cromwell, 2010 to 2013
  • Eric Flowers, 2012 to present
  • Darryl Fore, 2011 to present
  • Philip A. Haddad, MD, 2007 to present
  • Hilary Hansen, 2016 to present
  • John D. Kemp, Esq, 2007 to 2009
  • Jen Laws, 2016 to present
  • Duane Malone, 2009 to 2010
  • Glen Pietrandoni, Rh.P, 2009 to present
  • Gary Rose, 2007 to 2008
  • Elizabeth Shepherd, 2010 to 2015
  • Keita Simmons, 2007 to 2009
  • Robert Suttle, 2015 to present
  • Chrys Thorsen, 2014 to 2016
  • Joyce Turner-Keller, Arch-Bishop, 2007 to 2012
  • Rani G. Whitfield, MD, 2007 to 2008
  • Joey Wynn, 2009 to present
Among our directors, John D. Kemp, Gary Rose, and Arch-Bishop Joyce Turner-Keller, and Dr. Rani Whitfield have been named Directors Emeritus. We look forward to another decade dedicated to raising awareness, offering patient educational program, and fostering greater community collaboration.

Thursday, June 22, 2017

Summer is Hot, but the Debate Over Drug Pricing could be even Hotter

By: Brandon M. Macsata, CEO, ADAP Advocacy Association

Temperatures across the United States are sizzling with the arrival of summer, but they could pale in comparison to the emerging debate over the rising cost of prescription drugs. A state ballot initiative, coupled with a rumored presidential executive order and pending federal legislation in Congress are setting the stage for a heated battle over drug pricing.

In Ohio, voters are already being inundated with 30-second political attack ads from both sides of the debate. One advocate in the state has said, "Every commercial break is flooded with them... and it is only summer." The "Ohio Drug Price Relief Act" will take center stage before the voters in November 2017, with spending on political ads expected to break all previous records for any statewide ballot initiative.

The ballot initiative would "require the state of Ohio to pay no more for prescription drugs than the U.S. Department of Veterans Affairs (VA), which has negotiated a discount of up to 40 percent."[1] It is supported by the Ohio Taxpayers for Lower Drug Prices, and it is opposed by the Ohioans Against the Deceptive Rx Ballot Issue. Veterans groups have also lined up against the ballot initiative.

According to Ballotpedia, a "yes" vote supports the measure to require state agencies and programs to purchase prescription drugs at prices no higher than what the VA pays for them, and a "no" vote opposes the measure to require state agencies and programs to purchase prescription drugs at prices no higher than what the VA pays for them.[2]

"I would assume that the happiest people in Ohio today are the people who are selling television commercials. The pharmaceutical industry will spend whatever they believe they need to spend to try to confuse and mislead the public," summarized Rick Taylor, a consultant for the Ohio Taxpayers for Lower Drug Prices.[3] Here is a political ad airing in support of the ballot initiative:

TV commercial linked to https://youtu.be/HlubsZisoVQ
Source: Ohio Taxpayers for Lower Drug Prices

Curt Steiner, campaign manager for the Ohioans Against the Deceptive Rx Ballot Issue, argued, “Experts who have studied the proposal — including three former Ohio Medicaid Directors and a former state Budget Director — say it’s not only unworkable, but could actually increase prescription drug costs for the majority of Ohioans and reduce patient access to needed medications.”[4] Here is a political ad running against the ballot initiative:


Source: Ohioans Against the Deceptive Rx Ballot Issue

With the ballot initiative over four months away, voters in Ohio might simply turn off their televisions rather than contend with the forthcoming onslaught of these negative ads. There has been no public polling released on the issue in Ohio (...yet), but a similar ballot initiative failed last November in California.

In the meantime, news reports are floating that President Donald J. Trump plans to issue an executive order on drug pricing, though the timeline remains unclear. A draft version of the executive order, which was obtained by The New York Times, appears to give into demands by the pharmaceutical industry and rolls back numerous regulations.[5]



Some had hoped for rebates in Medicare Part D that would be similar to Medicaid,[6] but they appear absent from the draft obtained by The New York Times. Such a move would have greatly benefited consumers. It hard to see how the draft executive order would assist consumers, or public payors — such as State AIDS Drug Assistance Programs.

The measure is already being met with skepticism, especially because it appears to roll-back discounts authorized under the 340B Drug Discount Program. Dr. Joshua M. Sharfstein, a professor at Johns Hopkins Bloomberg School of Public Health, summarized this concern by saying, “That’s one that sticks out as a bit of a head scratcher. This is the executive order to lower drug prices — why would you put in a provision that would raise drug prices?[7]

Speaking for many in the patient advocacy community, Eddie Hamilton with the ADAP Educational Initiative questioned, "We don’t have any further information on this proposed draft, but it does raise some concerns. It appears to target 340B and the hospitals are, of course, screaming but we can’t verify that our community will be spared."

Congress isn't absent from the debate over drug pricing. In fact, a recent article in Roll Call spelled out the enormous pressure faced by lawmakers to do something on lowering the cost of prescription drugs. Presently, 802 bills addressing drug pricing have been introduced in Congress since the beginning of the year. Among them are the following:
  • S.1369 - A bill to amend the Internal Revenue Code of 1986 to establish an excise tax on certain prescription drugs which have been subject to a price spike, and for other purposes. (Note: H.R.2974 is the companion legislation before the House of Representatives)
  • S.1131 - Fair Accountability and Innovative Research Drug Pricing Act, which is a bill to require reporting regarding certain drug price increases, and for other purposes. (Note: H.R.2439 is the companion legislation before the House of Representatives)
  • H.R.1316 - Prescription Drug Price Transparency Act, which is a bill to amend title XVIII of the Social Security Act to provide for pharmacy benefits manager standards under the Medicare prescription drug program and Medicare Advantage program to further transparency of payment methodologies to pharmacies, and for other purposes.
  • H.R.242 - Medicare Prescription Drug Price Negotiation Act, which is a bill to amend part D of title XVIII of the Social Security Act to require the Secretary of Health and Human Services to negotiate covered part D drug prices on behalf of Medicare beneficiaries.
Ballot initiatives, executive orders, and legislation are all stoking the flames over the drug pricing debate, but they don't even include ongoing litigation filed by 20 state attorney generals. It is clear that the issue has reached a climactic point and something needs to be done about it. The ADAP Blog will continue to monitor each of these developments.


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[1] Pelzer, Jeremy (2017, May 3). Fight over Ohio Drug Price Relief Act ballot issue could set spending record. Cleveland.com. Retrieved from http://www.cleveland.com/politics/index.ssf/2017/05/fight_over_ohio_drug_price_rel.html.
[2] Ballotpedia. Ohio Drug Price Standards Initiative (2017). Retrieved from https://ballotpedia.org/Ohio_Drug_Price_Standards_Initiative_(2017). 
[3] Pelzer, Jeremy (2017, May 3). Fight over Ohio Drug Price Relief Act ballot issue could set spending record. Cleveland.com. Retrieved from http://www.cleveland.com/politics/index.ssf/2017/05/fight_over_ohio_drug_price_rel.html.
[4] Troy, Tom (2017, May 23). Opponents launch TV ad against Ohio Drug Price Relief Act. The Toledo Blade. Retrieved from http://www.toledoblade.com/State/2017/05/23/Opponents-launch-TV-ad-against-Ohio-Drug-Price-Relief-Act.html.
[5] Kaplan, Shelia, and Katie Thomas (2017, June 20). Draft Order on Drug Prices Proposes Easing Regulations. The New York Times. Retrieved from https://www.nytimes.com/2017/06/20/health/draft-order-on-drug-prices-proposes-easing-regulations.html.
[6] Nather, David (2017, May 12). Mulvaney says Trump wants executive action on drug prices. Axios. Retrieved from https://www.axios.com/vitals-2403219901.html.
[7] Kaplan, Shelia, and Katie Thomas (2017, June 20). Draft Order on Drug Prices Proposes Easing Regulations. The New York Times. Retrieved from https://www.nytimes.com/2017/06/20/health/draft-order-on-drug-prices-proposes-easing-regulations.html.

Thursday, June 15, 2017

2017 National ADAP Monitoring Project Annual Report

By: Brandon M. Macsata, CEO, ADAP Advocacy Association

National ADAP Monitoring Project - 2017 Annual ReportOn May 18th, an analysis of the AIDS Drug Assistance Program (ADAP) was released by the National Alliance of State & Territorial AIDS Directors (NASTAD). The 2017 National ADAP Monitoring Project Annual Report tracked state-by-state programmatic changes, emerging trends, and latest available data on the number of clients served, expenditures on prescription drugs, among other things.

The report, which is published annually by NASTAD, provides stakeholders an important snapshot into ADAP-related data, information, and trends. This year's report focuses on several areas, including:
  • The importance of the Ryan White Program and ADAP (p. 6)
  • What does it take to achieve viral suppression (p. 20)
  • Comprehensive care for people living with HIV/AIDS (p. 42)
  • Who benefits from services (p. 58) 
Upon releasing the 2017 National ADAP Monitoring Project Annual Report, Murray C. Penner, NASTAD's executive director, stated the following:[1]
"Over the course of time, there have been significant shifts in funding and client needs; ADAPs have worked to meet those needs, however, have sometimes found themselves unable to serve all those in need of services. Lessons have been learned from these circumstances and ADAPs continue to look to identify how they can meet client need and ensure program sustainability. At a time now when ADAPs are documenting program stability, it is imperative that ADAPs look back on how challenges were resolved and look to the future of client needs and determine ways to prepare for the future. ADAPs are at an unprecedented juncture of being able to look to target resources to populations that need them most, to partner with the RWPB to ensure that the whole client’s needs are met, and to identify ways to bolster treatment for individuals’ health."
The 2017 National ADAP Monitoring Project Annual Report overall yielded some very compelling data on the success of the AIDS Drug Assistance Program nationwide in 2016. Some key points are:
  • ADAPs provided medications to 225,517 clients in calendar year (CY) 2015, a 235% increase in utilization over the last 10 years;[2]
  • The majority (77%) of all clients served by ADAPs in CY2015 were reported as virally suppressed, de ned as having a viral load that is less than or equal to 200 copies/mL;[3]
  • Twenty-eight (28) states contribute funding to their ADAP budget.[4]
  • Thirty-eight (38) states receive drug rebates to their ADAP budget.[5]
  • Overall, nearly 98% of Part B and ADAP budgets are allocated to program services; only 2.2% of Part B and ADAP funding is used to administer the program;[6]
  • The majority of ADAPs pay premiums (84%), deductibles (84%) and prescription co-payments/co-insurance (94%) on behalf of eligible clients.[7]
  • Forty-three (43) ADAPs reported using funds for insurance purchasing/continuation, representing $161.8 million in estimated expenditures (10% of the ADAP budget at that time) for 30,621 ADAP clients, with an average cost per client of $5,284.[7]
Accompany this year's report are two infographics. NASTAD used one infographic to provide an analysis on ADAPs with the highest rates of viral suppression. Download the infographic, Key Characteristics of Ten ADAPs With Highest Rates of Viral Suppression. The other infographic gives an analysis on the Ryan White Part B and ADAP partnership. Download the infographic, Ryan White Part B and ADAP Partnership to Bolster Health Outcomes.

Total ADAP budgets range from $2.5 million (New Hampshire) to $348.9 million (New York)
Photo Source: NASTAD

Several advocates commented on the 2017 National ADAP Monitoring Project Annual Report, providing some important state perspectives. They include:

Ken Bargar, co-chair of the Florida HIV/AIDS Advocacy Network in Florida stated, "FHAAN has made access to our state's ADAP for Floridians a number one priority for many years. As Co Chair, I can tell you that we experience a great relationship with the Florida Department of Health, and we have provided many solutions for improving the program that they have implemented over the years. As a Medicaid non-expansion state, ADAP is crucial for people living with HIV in Florida. The increasing amount of clients receiving premium support for ACA plans has made this program robust and diverse in the ways they get access to HIV medication to our state’s most vulnerable clients. Recently, we were thrilled to see “pharmacy choice” finally became a reality for a section of the programs enrollees."

Eddie Hamilton, executive director of the ADAP Educational Initiative in Ohio, "In terms of transparency and the responsiveness to client’s concerns, Ohio's ADAP has come a long way since the last waiting list era. The ease of access to the program has drastically improved as there are now multiple routes of access (via case management, or direct application)."

Marcus J. Hopkins, an ADAP recipient and HIV/AIDS advocate in West Virginia, summarized, "West Virginia's ADAP is one of only twelve states in which 89% of enrolled clients in 2015 have achieved HIV Viral Loads ≤200. Our state had 1,139 clients in 2015, and only 3 Ryan White-specific clinics, meaning that many clients must travel 60 miles or more in order to reach one of these facilities. Our state is broken up into seven Ryan White regions, with 1 primary case manager contact per region. The small number of clinics serving 55 clinics (not including private Infectious Disease specialists) sometimes creates confusion, as clients living in different regions may have to coordinate between two different case workers. West Virginia's program also offers insurance continuation assistance, providing premium and co-pay assistance for clients enrolled in employer-based or ACA Insurance Marketplace coverage."

Matt Pagnotti, Director of Policy and Advocacy for AIDS Alabama, noted, "Since Alabama has failed to expand Medicaid under the ACA, the state's ADAP has operated as a vital safety net for thousands of people living with HIV in Alabama. Over three fourths of the clients served by Alabama's ADAP earn 133% FPL ($16,040 a year for a single adult) or less, most of whom find themselves in the "Medicaid coverage gap." In addition, roughly 16% of those served by ADAP in Alabama qualify for subsidized health insurance under the ACA marketplace. To assist these clients in overcoming financial barriers to access and create greater coverage completion, Alabama also operates an innovative Insurance Assistance Program that pays for premiums and co-payments."

The ADAP Advocacy Association commends NASTAD for its ongoing efforts to keep stakeholders informed, and engaged on the issues enumerated in this year's National ADAP Monitoring Project. Download a copy of the 2017 National ADAP Monitoring Project Annual Report.

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[1] Penner, Murray (2017, May 18); NASTAD Release: 2017 National ADAP Monitoring Project Annual Report; National Alliance of State & Territorial AIDS Directors.
[2] National Alliance of State & Territorial AIDS Directors (2017, May 18); 2017 National ADAP Monitoring Project Annual Report; p. 60. Retrieved from http://www.nastad.org/sites/default/files/2017-national-adap-monitoring-project-annual-report.pdf.
[3] National Alliance of State & Territorial AIDS Directors (2017, May 18); 2017 National ADAP Monitoring Project Annual Report; p. 22. Retrieved from http://www.nastad.org/sites/default/files/2017-national-adap-monitoring-project-annual-report.pdf.
[4] National Alliance of State & Territorial AIDS Directors (2017, May 18); 2017 National ADAP Monitoring Project Annual Report; p. 9. Retrieved from http://www.nastad.org/sites/default/files/2017-national-adap-monitoring-project-annual-report.pdf.
[5] National Alliance of State & Territorial AIDS Directors (2017, May 18); 2017 National ADAP Monitoring Project Annual Report; p. 9. Retrieved from http://www.nastad.org/sites/default/files/2017-national-adap-monitoring-project-annual-report.pdf.
[6] National Alliance of State & Territorial AIDS Directors (2017, May 18); 2017 National ADAP Monitoring Project Annual Report; p. 22. Retrieved from http://www.nastad.org/sites/default/files/2017-national-adap-monitoring-project-annual-report.pdf.
[7] National Alliance of State & Territorial AIDS Directors (2017, May 18); 2017 National ADAP Monitoring Project Annual Report; p. 44. Retrieved from http://www.nastad.org/sites/default/files/2017-national-adap-monitoring-project-annual-report.pdf.
[8] National Alliance of State & Territorial AIDS Directors (2017, May 18); 2017 National ADAP Monitoring Project Annual Report; p. 43. Retrieved from http://www.nastad.org/sites/default/files/2017-national-adap-monitoring-project-annual-report.pdf.

Thursday, June 8, 2017

Linkages to Care - Housing is Healthcare: Linking Stable Housing & Medication Adherence

By: Brandon M. Macsata, CEO, ADAP Advocacy Association

Find me a physician who treats patients living with HIV/AIDS, and I'm certain the physician stresses medication adherence to anyone who will listen (yes, probably even Dr. Ben Carson). Find me a patient living with HIV/AIDS, and I'm certain the patient notes an equally important message: I cannot worry about my medications unless I have a roof over my head (yes, someone needs to tell Dr. Ben Carson). Intertwined are these two important facts.

The important linkage between housing and healthcare was spelled out last year in a blog by Kathie Hiers, who serves as the President & CEO for AIDS Alabama. In her blog, Housing=Healthcare, Hiers stated the following key points:
According to the National Low Income Housing Coalition’s 2015 Out of Reach Report, not a single state in our nation offers a one-room apartment that a person working full time and making minimum wage can afford. In fact, federal minimum wage has not increased since 2009 while rents have risen in almost all metropolitan areas. For PLWH, the need for housing assistance is far too commonplace. According to the National AIDS Housing Coalition, at any given time about 50% of 1.2 million PLWH in our country experience homelessness or housing instability. Additionally, research indicates that people who are unstably housed or homeless have HIV rates up to 16 times as high as persons in stable housing. Unfortunately the need substantially outstrips the resources. But here’s the bottom line: housing for PLWH improves medical outcomes, reduces new transmissions through a reduction in risky behaviors, and provides cost savings. So much research exists to confirm these results that AIDS and Behavior in 2007 dedicated an entire issue to illustrate the findings.[1]
Unfortunately, there aren't enough affordable, stable housing units available to keep up with demand. The shortage undermines efforts to achieve positive health outcomes in many areas of the country, both in rural and urban areas. Efforts are underway to modernize the federal housing programs designed to help those in need, including the Housing Opportunities for Persons with AIDS (HOPWA). But not all of the "efforts" are necessarily good for the people the programs are designed to assist.

Dr. Ben Carson testifying before Congress
Photo Source: Slate.com

Testifying earlier this week before the U.S. Senate Committee on Appropriations Subcommittee on Transportation, Housing and Urban Development, Dr. Ben Carson, Secretary of the U.S. Department of Housing & Urban Development (HUD), summarized some of these changes to the federal government's housing policy:
"Last year’s changes to the formula for Housing Opportunities for Persons with AIDS (HOPWA) was a great step towards efficiency, shifting funding to areas with higher numbers of HIV/AIDS cases, rather than historical incidents. This is the kind of targeted efficiency that will help us do the most with limited Federal resources. We provide a phased-in approach to the new formula to provide communities time to adjust. The additional funding in 2017 also will help provide communities more time to adjust to the new formula. The 2018 Budget provides $330 million for HOPWA."[2]
Ironically, Secretary Carson failed to mention that the Trump Administration's proposed Fiscal Year 2018 budget calls for a $26 million funding cut from HOPWA and that "these cuts will certainly increase the number of people living with HIV who will not have stable housing."[3] The proposed reduction represents nearly a 7 percent cut in funding.

Concerns have been mounting over the potential impact of funding cuts to housing programs, as well as healthcare programs. David Reiss' Op-Ed earlier this year characterized the proposed budget as "bad news."[4]

Housing is Healthcare
Photo Source: Community Partnership of the Ozarks

In an effort to raise awareness about affordable, stable housing and how it improves medication adherence for people living with HIV/AIDS and/or viral hepatitis, we will host an educational training webinar on June 28, 2017. The webinar, "Housing is Healthcare: Linking Stable Housing & Medication Adherence," will discuss the research that supports housing as a structural intervention that improves health outcomes through improved adherence to treatment. Presenters will share successful housing models where residents have seen this success. It will provide webinar attendees with how to use research to show the direct causation between health outcomes and housing placement, and understand strategies to the connection between medication adherence and stable housing.

Registration is open to all stakeholders. Registration is complimentary for PASWHA members, and it is also complimentary for patients living with HIV/AIDS. Use this scholarship link if you are a patient living with HIV/AIDS applying for a webinar scholarship.

Additional information about the webinar is available online at https://www.123signup.com/event?id=nhjqn.

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[1] Hiers, Kathie (2016, May 6); ADA Blog; Housing=Healthcare; ADAP Advocacy Association. Retrieved from http://adapadvocacyassociation.blogspot.com/2016/05/by-kathie-hiers-president-ceo-aids.html.
[2] Carson, M.D., Ben (2017, June 7); Written Testimony on Review of the FY2018 Budget Request
for the U.S. Department of Housing & Urban Development; Committee on Appropriations Subcommittee on Transportation, Housing and Urban Development. Retrieved from https://www.appropriations.senate.gov/imo/media/doc/060717-Carson-Testimony.pdf.
[3] Schmid, Carl (2017, May 23); TRUMP BUDGET: A SETBACK TO HIV AND HEPATITIS ELIMINATION; The AIDS Institute. Retrieved from http://www.theaidsinstitute.org/sites/default/files/attachments/TAI%20FY18%20Budget%20Press%20Release%20FINAL.pdf. 
[4] Reiss, David (2017, March 16); Trump's budget proposal is bad news for housing across the nation; The Hill. Retrieved from http://thehill.com/blogs/pundits-blog/economy-budget/324211-how-trumps-budget-cuts-could-affect-housing-for-thousands.

Thursday, June 1, 2017

Finding Emotional & Physical Health in Sobriety

By: Jonathan J. Pena

Philosopher Kahlil Gibran once wrote, “Out of suffering have emerged the strongest souls; the most massive characters are seared with scars.”

I believe that we are all products of our environment. That the experiences we are exposed to greatly influences our behavior and process of thinking, which we carry with us throughout our entire lifetime. The products of my environment lead me down a path of immense suffering; it was one I desperately tried masking by altering myself with my great escape into drugs. My addiction, my sexuality, my HIV-positive diagnosis, and the loss of my mother to cancer were all struggles that have left there mark.

When I was five years old my parents got divorced because my dad was unfaithful to her. I was totally devastated. As I got older, I started to carry feelings of blame and started to believe that I had done something wrong to cause my father not be around my mom and his two first-born sons.  Around this same time, I was also feeling displaced from my peers because I just felt different from everybody else. I didn’t necessarily fit in with any of the kids or groups in school, and feelings of loneliness seeped in. I don’t believe that children are capable of processing the emotions of a divorce, nor the complexities of ones sexuality. All I knew for sure is that I was in a lot of pain and feeling very inadequate.

All of that emotional weight and pressure needed a place to go or a way to be released, and I found my escape in drugs. It started with pot and escalated into harder drugs. In the end, I became addicted to crystal meth and my life became completely unmanageable. My relationships with family and friends suffered or completely disappeared. I was losing countless jobs, tons of money, along with my dignity...and my life. My addiction to crystal meth led me into prostitution. I couldn’t hold down a steady job so in order to manage any sort of bills and my habit, I sold my body to any man who was willing to open up his wallet. Somewhere, in the middle of all that, I became HIV-positive. I was already struggling with the mere idea of my self worth, and testing HIV-positive completely shattered me because who was going to love me knowing that I was so tainted?

In 2015, I checked myself into a drug rehabilitation center in Philadelphia and during this time my mom’s battle with Leukemia was taking its toll. The cancer had spread to her brain and one month after I completed my program she passed away. I was holding her hand when she passed and the pain of her loss was unbearable. However, I was grateful that sobriety gave me the opportunity to be present for her death. I relapsed shortly afterwards because I was unable to process my emotions of pain and loss. But...I didn't give up on myself.

Photo of Jonathan J. Pena
Today, I am living a sober life and approaching my one-year anniversary. My outlook on being HIV-positive has changed, and I no longer view myself as being tainted or unlovable. I am completely adherent with my medication and as such, my viral load is undetectable. I have realized the importance of maintaining and respecting my emotional and physical health, which includes taking my medication every day. Being HIV-positive doesn’t define me, but rather it is a part of me. 

Through sobriety and therapy, I have also become employed and living in my own apartment. I was recently accepted into North Carolina State University, where I will begin classes in the Fall 2017. I am studying to be an Oncology social worker with the hopes of being a support system for those who have lost a loved one due to cancer. I have re-established my connections with the people that I love and that love me in return. I am grateful, humbled, and renewed in my purpose in life through my sobriety.

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Disclaimer: Guest blogs do not necessarily reflect the views of the ADAP Advocacy Association, but rather they provide a neutral platform whereby the author serves to promote open, honest discussion about public health-related issues and updates. 
            

Thursday, May 25, 2017

Trump's Proposed Federal Budget Puts Bullseye on People Living with HIV/AIDS (and many other chronic conditions)


By: Brandon M. Macsata, CEO, ADAP Advocacy Association

The executive budget — which is mandated by federal law to be submitted by the President of the United States to Congress — is rarely taken seriously because the legislative branch typically adopts a federal budget that does not come close to resembling the budget proposed by the executive branch. That said, it does signal the President's priorities for the coming year. Sadly, President Donald J. Trump's proposed budget makes clear that people living with HIV/AIDS (among many other chronic health conditions) aren't among his priorities.

The ADAP Advocacy Association was quick to condemn Trump's proposed budget via Twitter @adapadvocacy.

Trump Administration's proposed budget is a complete nightmare, but fortunately Congress never adopts the prez budget. #HIV #NoFundingCuts
There is an emerging pattern with Trump, which started during the presidential primary and continued throughout the general election...and now into his presidency. He routinely makes statements that completely contradict one another, and his proposed budget continued that trend.

How?

Trump's budget for the U.S. Department of Health & Human Services ("HHS") included legislative language relevant to the reauthorization of the Ryan White CARE Act, which is technically due for an update. The language reads:
"The Administration looks forward to working with Congress to reauthorize the Ryan White program to ensure that Federal funds are allocated to address the changing landscape of HIV across the United States. Reauthorization of the Ryan White program should include changes to the funding methodologies for Parts A and B to ensure that funds may be allocated to target populations experiencing high or increasing levels of HIV infections/diagnoses, such as minority populations, while continuing to support Americans that are already living with HIV across the nation. African Americans, for example, account for a higher proportion of new HIV diagnoses, those living with HIV, and those ever diagnosed with AIDS as compared to other races/ethnicities. The new Ryan White authorization should allow for resources to be focused on populations with disproportionately high rates of new infections/diagnoses."
Yet, that same budget called for draconian funding cuts to numerous federal programs specifically designed to assist people living with HIV/AIDS (including some authorized under the very same Ryan White). Among them:
  • Eliminating $34 million for AIDS Education and Training Centers
  • Eliminating $25 million for Special Projects of National Significance
  • Reducing $13 million in funding for Rural Outreach Grants (19.05% decrease)
  • Eliminating $42 million for Rural Hospital Flexibility Grants 
  • Reducing $7 million in funding for Telehealth (41.18% decrease)
  • Reducing $9 million in funding for State Offices of Rural Health (90% decrease)
  • Reducing $186 million in funding for HIV/AIDS, Viral Hepatitis, STIs and TB Prevention (16.61% decrease)
  • Reducing $1.3 billion in funding for Social Services Block Grant (78.69% decrease)
The budget also calls for flat funding for many other HIV-specific programs, including the AIDS Drug Assistance Programs (ADAPs) at $899 million. That might be acceptable under "normal" conditions, but the President and the Republican-led Congress are simultaneously trying to rollback numerous protections provided under the Affordable Care Act ("ACA") — such as Medicaid expansion, and Essential Health Benefits. It includes significant cuts to programs authorized under the National Institutes of Health ("NIH"), as well as programs providing mental health services, housing assistance, and addiction treatment.

Trump's budget has been universally denounced by the HIV/AIDS and Viral Hepatitis communities, as noted herein:
  • Ken Bargar, Co-Chair, Florida HIV/AIDS Advocacy Network (FHAAN): "Somewhere the President's advisors failed him. These are budget cuts to peoples' lives, their medications, their care and their shelter. As advocates, we cannot allow this budget to get any traction or legitimize it in any way. Congress appropriates our country's spending and that's were we should put our efforts. Let's let every Member of Congress know we won't stand for an administration that is willing to kill it's own people."
  • Michael Ruppal, Executive Director of The AIDS Institute: "The country has made great progress in the fight against HIV/AIDS and STDs, but if these cuts are enacted, we will turn back the clock, resulting in more new infections, fewer patients receiving care, and ultimately, more suffering from diseases that are preventable and treatable."
  • William E. Arnold, President & CEO of the Community Access National Network: "The president’s budget fails to meet the rising tide of viral hepatitis at a time when we’re on the cusp of seeing a sharp rise in new Hepatitis C infections. Flat funding HCV programs, while also cutting key HIV-related programs will prove problematic as we attempt to address the growing number of individuals co-infected with both HIV, and HCV."
  • Jesse Milan, Jr., President & CEO of AIDS United: "We have seen historic decreases in the number of new HIV infections over the past six years because of sustained investments in prevention, and we have thousands of HIV positive Americans who have yet to achieve viral suppression through treatment programs. By cutting funding, the work we have done will be reversed, and all the work left to do will falter and put the health of our nation at risk."
  • Ryan Clary, Executive Director of the National Viral Hepatitis Roundtable (NVHR): "President Trump’s assault on the health care system through his unconscionable cuts to Medicaid and other vital safety net programs will cause severe harm to people living with and at risk for hepatitis B and C. If enacted, the result will be continued alarming increases in hepatitis B and C infections, high numbers of individuals unaware of their status, and needless death and suffering due to lack of access to care and treatment. NVHR calls on Congress to reject this budget immediately and work together to pass an appropriations bill that expands access to quality health care for all and increases badly needed funding for the Division of Viral Hepatitis at CDC."
  • Murray C. Penner, Executive Director of the National Alliance of State & Territorial AIDS Directors (NASTAD): "Together we will fight these cuts at every stage of the appropriations process. We need to protect these programs that provide life-saving treatment for those living with HIV and work to prevent the spread of HIV and STDs. We trust that Congress will agree and recognize that these cuts are harmful, short-sighted, and will damage our nation's public health infrastructure."
  • Edward Hamilton, Executive Director of the ADAP Educational Initiative: "The administration’s proposed budget cuts across multiple programs will set back the gains that have been made in domestic and worldwide HIV epidemics 20 years. With the proposed changes in Medicaid and the Affordable Care Act, ADAPs nationwide will collapse due to the unprecedented strains on their budgets from rising drug costs coupled with forecasted increased premiums."
People living with HIV/AIDS, as well as viral hepatitis and other chronic conditions, don't deserve to have a bullseye on them. Trump's proposed budget would fail our nation's most vulnerable and neediest people, and as such, Congress should ignore it.
Bullseye target with arrows in the center
Photo Source: GalleryHip.com
The President's budget can be viewed online at https://www.whitehouse.gov/omb/budget/.

Friday, May 19, 2017

PAN Foundation Opens HIV Prevention & Treatment Fund

By: Brandon M. Macsata, CEO, ADAP Advocacy Association

The Patient Access Network (PAN) Foundation — a corporate partner of the ADAP Advocacy Association — announced that it opened its fund for HIV Prevention And Treatment. Presently, there are 56 HIV-related medications covered by this program.

Apply Online at https://panfoundation.org/index.php/en/patients/how-to-apply
The PAN Foundation is accepting applications for new and renewal patients. People needing financial reprieve from the cost of their HIV-related medications are eligible for assistance up to $3,400 per year (additional assistance may be available, subject to the availability of funding). In fact, nearly 60 disease-specific assistance programs to help patients pay for their out-of-pocket costs are made available by the organization.

The PAN Foundation is an independent, national 501 (c)(3) organization dedicated to helping underinsured patients with chronic and critical illnesses afford their out-of-pocket medical expenses. Over the last thirteen years, they have provided more than 700,000 underinsured patients with over $2.5 billion dollars in financial assistance.[1]

Patients and advocates can apply for PAN assistance by phone at (866-316-7263) or online (Click here to start the application online).

[1] Patient Access Network Foundation (2017).

Thursday, May 11, 2017

Communication is key in creating an environment for shared decision-making

By: Kathleen D. Gallagher, MPH, Patient Advocate Foundation, and Rebecca Kirch, JD, National Patient Advocate Foundation

Patients and families confronting chronic, debilitating or life-threatening conditions at any age and any disease stage require reliable and affordable access to high quality therapies and supportive services throughout the care continuum in the settings that are best for them to optimize their outcomes and experiences. Yet today’s disease-centric care is fragmented across multiple specialists, subspecialists and settings, creating pressures to navigate pathways-driven treatments that overlook quality of life, functional outcomes, other personal priorities or individual characteristics that matter a great deal to patients and their families.

We know that patients rarely experience their symptoms as one isolated problem and can benefit from care that is truly person-centered and involves shared decision making. To accomplish this person-centered health care transformation, knowing precisely what is important to patients and families is paramount. Progress also requires dedicated commitment to enhancing clinical communication that is person-centered and goal-directed – learned skills that are essential drivers for delivering value-based care.

Photo Source: paintalks.com

Better health care value begins with improved communication about goals of care and personal values. Patients and families consistently report that they want to be involved in understanding their disease prognosis and treatment options and making decisions about their care. We chose to address these concerns as part of a grant funded project through targeted online survey efforts. Our primary goal was to examine multiple thematic areas from a broad patient perspective designed to explore the dimensions of what matters to patients.

The following highlights the preliminary analysis of some of the data collected from our virology cohort (HIV+ patients), specifically around the theme of communication. Survey participants were asked a series of 5 questions to gather information on how they wanted to receive health information, how involved they wanted to be in making healthcare related decisions, discussing what matters to them when selecting a treatment option, and their comfort level in broaching the conversation about quality of life with their doctor.

When asked, “how do you like to approach making decisions about your treatment” over 65% of the respondents wanted to make decisions in partnership with their medical versus the 14% who wanted to make their decisions alone or the 5% wanted the physician to make the choice for them. An additional 14% wanted their doctor to explain all of the options to them in detail before working together to make a treatment choice. The message from this data point is clear and supports our hypothesis that patients want dialog and information from their medical team and they want to be partners in making treatment choices.

In regards to doctor initiated conversations about things that are important to the patient in their care (non-clinical outcomes) 60% of respondents stated that their doctor did ask them about “what is important to you as part of making plans for your treatment”. Although this data point is encouraging, what was most compelling was that over 95% of those who answered in the affirmative, followed this question with a positive response to the question “did you feel that your doctor took that information into account when making recommendations”. So not only were the able to have the conversation – but their input was valued and used to identify and select a treatment option that was of value to them.

While only a small selection of the 100+ questions asked in the Patient Value Survey, the preliminary data gathered around patient-provider conversation in regards to treatment and care is encouraging. Historically, the HIV population have been the groundbreakers and drivers of action and having a voice in the way their chronic condition is treated. As we continue to use the collected data to drive a better understanding of what matters to patients, and how best to equip them for conversations about their comprehensive care and planning treatments that provide them the quality of life that they are seeking, we will continue to reach out to our non-profit partners to ensure that all voices are being heard.

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Disclaimer: Guest blogs do not necessarily reflect the views of the ADAP Advocacy Association, but rather they provide a neutral platform whereby the author serves to promote open, honest discussion about public health-related issues and updates.