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.


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.

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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/