Thursday, September 14, 2017

Kaiser Family Foundation Publishes Fact Sheet on AIDS Drug Assistance Programs (ADAPs)

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

The Kaiser Family Foundation (KFF) recently published an excellent Fact Sheet on the AIDS Drug Assistance Programs (ADAPs), which are authorized under the Ryan White CARE Act. ADAP provides medications for the treatment of HIV disease for people who are uninsured, or under-insured. The ADAP Advocacy Association commends KFF for making this important educational tool available.

Download the KFF Fact Sheet.

The KFF Fact Sheet is broad, in that it provides relevant background information about ADAP, as well as budgetary summaries, drug formularies, and program expenditure breakdowns. It also highlights information on eligibility requirements, client demographical data, cost containment measures, drug purchasing models, and pertinent information related to Medicare Part D. It serves as a useful tool, especially for advocates trying to educate lawmakers at the federal, state, and local levels.

Did you know that ADAPs are not entitlement program?[1]

Did you know that State funding only accounted for 6% of the overall ADAP budget?[2]

Did you know that the average amount spent on drug purchases and co-payments was $8,663?[3]

Did you know that 257,396 people were enrolled in ADAPs in CY 2015, ranging from 140 in Wyoming to more than 35,000 in California?[4]

Did you know that not all State ADAPs received rebates from drug companies?[5]

These interesting facts, along with others can be viewed online at http://www.kff.org/hivaids/fact-sheet/aids-drug-assistance-programs/.

Profile of ADAP Clients, 2015.
Source: Kaiser Family Foundation




















The National Alliance of State & Territorial AIDS Directors (NASTAD) released its 2017 National ADAP Monitoring Project Annual Report earlier this year, which 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 Fact Sheet on the AIDS Drug Assistance Programs (ADAPs) published by KFF certainly complements the comprehensive analysis done by NASTAD on the program, annually.

Of particular interest to the ADAP Advocacy Association  as well as many ADAP stakeholders  is the overview on the drug formularies provided in the KFF Fact Sheet. These drug formularies are the foundation by which states mold their strategies to promote access to care and treatment. According to the KFF Fact Sheet, some key points of interest include:[6]
  • Six (6) states had an open formulary
  • All states offered all of the drugs identified in the “recommended regimens” in the nation’s HIV treatment guidelines.
  • Of the 45 ARVs currently available (including multi-class combination products and generics), ADAP formularies covered between a low of 37 drugs in Arkansas to all 45 in 27 states.
  • In addition to ARVs, many ADAPs provide access to drugs to treat opportunistic infections and HIV co-infection (e.g. treatment for hepatitis).
The importance of state drug formularies cannot be understated!

Dating back to the inception of this organization ten years ago, we have routinely sounded a cautionary alarm that the ADAP waiting lists (which were officially eliminated several years ago) are only the “tip-of-the-iceberg” because other cost containment measures restrict access to care and treatment. Among them, restrictive drug formularies. By limiting the treatment regiments available to people living with HIV/AIDS, states are indeed restricting access to care and treatment. These restrictions can also impact treating other chronic conditions associated with the disease, such as lipodystrophy or diarrhea.

Concerns over restricted state drug formularies was charactered as follows by Eddie Hamilton, Founder of the ADAP Educational Initiative: "The increased cost or additional effort of restricted formularies are a barrier for ADAP clients and may cause them to abandon the prescription which their doctor has written for a medically necessary reason. Many of the excluded medications are to combat side effects and co-morbidities caused by the primary antiretroviral regimens. These restrictions will continue to compromise their health and will lead to costly complications such as hospitalizations, lower medication adherence and overall higher healthcare costs."

To be fair, State ADAPs are often forced to face the harsh reality of prioritizing limited resources, especially since not all of them receive state matching funds or pharmaceutical rebate dollars. Also to NASTAD's credit, they make available another great resource, specific to ADAP drug formularies. Download the 2016 ADAP Formulary Database.

To learn more about the KFF Fact Sheet on AIDS Drug Assistance Programs, or other HIV-specific information and resources offered by the Kaiser Family Foundation, visit http://www.kff.org/graphics/hivaids/.
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[1] Kaiser Family Foundation (2017, August 16); AIDS Drug Assistance Programs (ADAPs); HIV/AIDS. Retrieved from http://www.kff.org/hivaids/fact-sheet/aids-drug-assistance-programs/.
[2] Kaiser Family Foundation (2017, August 16); AIDS Drug Assistance Programs (ADAPs); HIV/AIDS. Retrieved from http://www.kff.org/hivaids/fact-sheet/aids-drug-assistance-programs/.
[3] Kaiser Family Foundation (2017, August 16); AIDS Drug Assistance Programs (ADAPs); HIV/AIDS. Retrieved from http://www.kff.org/hivaids/fact-sheet/aids-drug-assistance-programs/.
[4] Kaiser Family Foundation (2017, August 16); AIDS Drug Assistance Programs (ADAPs); HIV/AIDS. Retrieved from http://www.kff.org/hivaids/fact-sheet/aids-drug-assistance-programs/.
[5] Kaiser Family Foundation (2017, August 16); AIDS Drug Assistance Programs (ADAPs); HIV/AIDS. Retrieved from http://www.kff.org/hivaids/fact-sheet/aids-drug-assistance-programs/.
[6] Kaiser Family Foundation (2017, August 16); AIDS Drug Assistance Programs (ADAPs); HIV/AIDS. Retrieved from http://www.kff.org/hivaids/fact-sheet/aids-drug-assistance-programs/.

Thursday, September 7, 2017

National Standards of Care for TGIQ Health

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

Earlier this year, several important resources were made available by the ADAP Advocacy Association to promote better access to care for transgender men & women living with HIV/AIDS. One of the collaborative partners in that effort was RAD Remedy, which connects trans, gender non-conforming, intersex, and queer folks to accurate, safe, respectful, and comprehensive care in order to improve individual and community health. Now, RAD Remedy has published a "uniquely grassroots" document to establish clear guidelines for providers serving these underserved communities.

The National Standards of Care for TGIQ Health includes community-driven best practices for providers to meet and can be used by patients and providers alike to advocate for improvements in forms, systems, and practices. Branded as a "community-driven understanding of competent care for trans, gender non-conforming, intersex, and queer individuals," it lays down the groundwork to provide culturally and linguistically appropriate services (CLAS).

National Standards of Care for TGIQ Health
National Standards of Care for TGIQ Health
In these groundbreaking standards, RAD Remedy puts the CLAS standards in action by outlining key components of culturally competent care and treatment for trans, gender non-conforming, intersex, and queer individuals. They encompass regulatory actions, paperwork, office practices, human resources, marketing, and community engagement.[1]

Upon releasing the new national standards, Riley Johnson, RAD Remedy's executive director, summarized: "This uniquely grassroots document is an open opportunity for providers and hospital systems nationwide to become a positive presence in the lives of TGIQ folks. We look forward to honing forms, systems, and practices which directly impact the health and welfare of our communities."

This is not the first initiative by RAD Remedy to address the significant health disparities and care barriers faced by these communities. In June 2015, RAD Remedy launched the Referral Aggregator Database, a review and referral database that, for the first time, empowered TGIQ people to share reviews and experiences, providing comprehensive information to the community and feedback for providers. The database now has over 4000 providers nationwide and sees an average of 6000 unique visitors per month.

Download the National Standards of Care for TGIQ Health.

For more information, please visit RAD Remedy at RADremedy.org or email at info@radremedy.org.

Related resources:

__________
[1] Colin, E., Hennessy, R,, Johnson, R., Lowden, R., and Sloane, S; (2017) National Standards of Care for TGIQ Health; RAD Remedy. Retrieved from http://static.radremedy.org/guides/RAD-Remedy-2017-Standards-of-Care-Color.pdf.
[2] Johnson, R.; (2017, August 28) National Standards of Care for TGIQ Health to Help Providers Improve Services; RAD Remedy.


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/