Despite Treatment Improvements, Patients Remain Concerned about Lipo

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

In 2016, a lot of attention was devoted to raising awareness about lipodystrophy by the ADAP Advocacy Association — including blogs, webinars, and public comment. Whereas some advocates might see this effort as inconsequential, or even trivial considering the larger ongoing debate about access to care and treatment, it isn't either for the patients living with the condition. HIV-related lipodystrophy is very real, and its impact on the patients living with the condition shouldn't be discounted. In fact, raising awareness about lipodystrophy and treatment for the condition is consistent with our mission to improve access to care for persons living with HIV/AIDS.

HIV-related lipodystrophy can manifest itself as fat loss or fat buildup or both. It isn't uncommon for people living with HIV-infection to express concern about developing facial wasting, belly fat, lipomas, or the dreaded "buffalo hump" on the back of the neck.

Photo Source: Boston Globe

Lipodystrophy can also contribute to certain co-morbidities and health risks, such as too much fat gain in the abdominal cavity increasing the risk of heart attack and diabetes.[1] There are also psychological effects, such as depression, feeling socially isolated, and suffering from low self-esteem.[2]

According to the National Alliance of State & Territorial AIDS Directors' (NASTAD) 2016 National ADAP Monitoring Project Annual Report, approximately 50% of clients on the AIDS Drug Assistance Program (ADAP) are age 45 or older.[3] It is safe to assume that many of these ADAP clients are long term survivors, who probably were prescribed some of the older, more toxic antiretroviral medications. Many of these medication, in fact, have been attributed to HIV-related lipodystrophy.

"HIV long-term survivors are primarily impacted by lipodystrophy because it was a side effect of several of the earlier treatments," said Tez Anderson, founder Let’s Kick ASS. "Lipodystrophy is more than cosmetic. Exacerbated by body shape changes, such as facial wasting or the appearance of a distended stomach associated with excess visceral adipose tissue (VAT) is associated with a variety of health concerns, like diabetes and cardiovascular disease."

According to Anderson, lipodystrophy may increase the risk for comorbidities and may worsen a person’s quality of life and body self-image. "Too many HIV long-term survivors, lipodystrophy is like battle scars from decades of living with HIV. Talking to your doctor about it is important," he argued.

Robert Reed, who is 55 years old and HIV-positive for nearly half of his life, summarized how lipodystrophy impacted his life: "I was in very severe depression and refused to leave my house (unless for doctor's appointments) or go anywhere, until last year's ADAP Advocacy Association annual conference in Washington, DC. Lipodystrophy and the subsequent fear someone may say something about my weight led me to live in isolation for eight long years. Fortunately, I'm now on treatment for the condition."

People newly diagnosed with HIV-infection are also concerned about lipodystrophy, evidenced by a recent submission to TheBody.com's "Ask the Experts" forum:[4]

"Dear Dr. Pierone;
If someone started HAART today with one of the 5 recommended first line regimens, and he did everything else by the book ( stay fit, eat healthy, keep his total cholesterol, HDL, LDL, triglycerides and glucose levels within normal limits), what would be the likelihood (in a rough percentage figure, if possible) that he would develop lipodystrophy after 15-20 years on therapy?
Looking forward to your answer. Thanks a lot for you input, John"

The exact cause of lipodystrophy is unknown. It is estimated that between 10-30% of patients will develop the condition. For years, there's been a common misconception that this condition is just a physical cosmetic issue that is a side effect of earlier HIV treatments — something that must be accepted as a reality of now living longer with HIV-infection. Recent research dispels that myth so that even with newer antiretroviral medications this condition continues to exist. Thus, we will continue our advocacy efforts in 2017 on HIV-related lipodystrophy.

Read our related blogs on this topic:

• Why HIV Medical Treatment Guidelines Matter (published on October 28, 2016)
• Mandating Treatment for HIV-Related Lipodystrophy: The Massachusetts experience and a call for national action (published on August 25, 2016)
• HIV-Related Belly Fat: More Than Just an Appearance Issue (published on June 23, 2016)

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[1] National Institutes of Health (NIH); AIDSinfo.gov; "Side Effects of HIV Medicines"; 2016.
[2] POZ Magazine; "Changes to Your Face and Body (Lipodystrophy & Wasting)"; February 14, 2016.
[3] National Alliance of State & Territorial AIDS Directors (NASTAD); "2016 National ADAP Monitoring Project Annual Report"; 2016; page 19.
[4] TheBody.com; Ask The Experts; "Current Regimens and Lipo"; October16, 2016.

Social Workers & HIV Community Resources

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

The ADAP Advocacy Association prides itself on bringing together ALL stakeholders concerned about improving access to care and treatment for people living with HIV/AIDS, namely through the AIDS Drug Assistance Program (ADAP). To that end, one of the most important — and arguably most under appreciated — stakeholder groups in this fight are social workers. Social workers specializing in HIV/AIDS-related supports and services often facilitate critical linkages to care for their patients.

The National HIV/AIDS Strategy (NHAS) recognizes the critical role being played by social workers because they are uniquely positioned to integrate all facets of the care continuum. In fact, many of the NHAS' key indicators cannot be achieved without social workers on the front lines — mainly increasing the percentage of persons with diagnosed HIV infection who are retained in HIV medical care to at least 90 percent, and reducing the percentage of persons in HIV medical care who are homeless to no more than 5 percent.[1]

Since the dawn of the epidemic, social workers have made the difference between life and death for countless people living with the disease. In fact, Michael Shernoff, MSW summarized it best in 1990 when he penned the following:

"This profession can be justly proud of the often pioneering work done by social workers from the onset of the AIDS health crisis in developing psychosocial services of singular diversity and effectiveness that reach out to people infected and affected by HIV. Even before the significance of HIV was known and complete knowledge of the modes of transmission was verified, social workers began to make important contributions to all professionals' understanding of AIDS."[2]

Linkages to care characterizes where social workers fit within the care continuum.We need to be doing more to support their efforts, too.

The premier event for social workers specializing in the HIV/AIDS treatment area is the National Conference on Social Work and HIV/AIDS. In fact, on May 25—28 in Atlanta, Georgia, social workers will convene annually for the 29th time to participate in discussions focusing on "Ending HIV/AIDS through Social Justice: Health Equity for All!" The Boston College School of Social Work sponsors the conference.

Photo Source: Collaborative Solutions, LLC

The ADAP Advocacy Association for the last several years has convened its ADAP Regional Summit in the South, in order to call attention to the epidemic's disproportionate impact on the region. We're excited to see that the National Conference on Social Work and HIV/AIDS is convening in the South for that very same reason. According to the conference website, "...the Southern region of the U.S. is experiencing an unprecedented increase in HIV cases; which is why it is fitting for us to convene this year’s conference in the heart of the South."

In 1990, Shernoff lamented the social injustice faced by people living with HIV/AIDS during the previous decade. Nearly twenty years later, his words still ring true evidenced by the chosen theme for the 29th Annual National Conference on Social Work and HIV/AIDS. No matter how much things change, they stay the same.

Learn more about the conference online at http://nationalconferenceonsocialworkandhivaids.com. Questions? Contact them at Info@NationalConferenceOnSocialWorkandHivAids.com.

Additional resources include:

• Professional Association of Social Workers in HIV & AIDS (PASWHA)
• National Association of Social Workers HIV/AIDS Spectrum (NASW)
• Canadian Association of Social Workers (CASW)

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[1] AIDS.gov; U.S. Department of Health & Human Services; "National AIDS Strategy"; 2017.

[2] Shernoff, Michael; The Body Dot Com; "Why Every Social Worker Should Be Challenged by AIDS"; 1990. 

10 Years of Accomplishment, Advocacy & Access to Care

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

It is hard to believe it is true, but 2017 marks the 10-year anniversary for the ADAP Advocacy Association. What started out as an idea by our founder and co-chair, William "Bill" Arnold, and a small start-up grant from Ramsell Corporation, has bloomed into a national voice for people living with HIV/AIDS who rely on the AIDS Drug Assistance Program (ADAP). Throughout these ten years one thing has remained true, that the voice of people living with HIV/AIDS shall always be at the table and the center of the discussion.

One of our greatest accomplishments was launching the ADAP Directory, which was initially made possible by generous grants from AbbVie, Merck, and Walgreens. The groundbreaking approach provides a one-stop online resource center for the latest ADAP information for better decision-making for HIV/AIDS care, improved quality of HIV/AIDS information, and assistance for advocates and care providers. In 2016, over 21,000 users visited the ADAP Directory. Additionally, last year we added the "ADAP Eligibility Calculator" as a new user-friendly, patient-centric tool — powered by Pill Pack — designed to provide additional information about possible ADAP eligibility.

Years earlier during the ADAP waiting list crisis, we hosted an Emergency ADAP Summit in Fort Lauderdale just as the Florida ADAP was on the verge of kicking nearly 3,000 patients off of the program. The event embodied activism in motion because patients were speaking out against the growing waiting lists. Behind the scenes the former President & CEO of the Heinz Family Philanthropies, Jeffrey Lewis, was bringing together the necessary players to launch the Welvista Solution — which provided life-saving medications to literally thousands of people living with HIV/AIDS on ADAP waiting lists. We were honored to have played a role in making it happen.

That same year, we released Public Service Announcements on ADAPs to raise awareness about ongoing the ADAP waiting list crisis. The 60-second PSA aired over six weeks from February 21, 2011, to April 3, 2011, over 210 media outlets nationwide. The PSAs were produced by Neil Romano of The Romano Group, LLC – who worked on campaigns such as "Just Say No" and "America Responds to AIDS."

2017 is a new year, and with it will undoubtedly come new challenges. There remains much uncertainty over the incoming Trump Administration and its implications for the Affordable Care Act and the Ryan White CARE Act. For now, we are continuing to focus on what has been our stable approach to advocacy: the patients voice! Our 10th Annual Conference — which is slated for September 22-23, 2017 in Washington, DC — is being themed, "Unchartered Water: AIDS Drug Assistance Programs in the Age of Trump." In addition, possible collaborative projects are being planned with the AIDS Healthcare Foundation (AHF), Community Access National Network (CANN), HealthHIV and the Professional Association of Social Workers in HIV & AIDS (PASWHA).

This year, two special education projects are planned to improve access to care among transgender men and women living with HIV/AIDS, as well as linkages to care for incarcerated (and formerly incarcerated) populations. As in years past our Scholarship Fund will ensure that the patients voice remains front and center, and this objective couldn't be achieved without the fund's two chief funders, CANN and Housing Works, as well as the many other supporters.

Access to care has been at the center of our mission, and it will continue to do so. Adherence is key to HIV treatment working, thus promoting a robust AIDS Drug Assistance Program is vital to combatting the disease and ending the epidemic. Though our focus is almost exclusively on ADAPs, we will continue to work with advocates, community, health care, government, patients, pharmaceutical companies, and other stakeholders to raise awareness, offer patient educational program, and foster greater community collaboration.

In closing, we would like to thank our funders because our 10th anniversary couldn't happen without their past and ongoing support. Since 2007, our funders have included: Abbott Laboratories, AbbVie, AIDS Alabama, AIDS Drugs Online, AIDS Healthcare Foundation, Alibi Wilton Manors, American Association for Homecare, Audio Visuals & Computer Services, Bender Consulting Services, Biotechnology Industry Organization, Bristol-Myers Squibb, Broward House, Community (A Walgreens Pharmacy), Community Access National Network, Dab the AIDS Bear Project, DC's Most Fabulous Magazine, Diplomat Specialty Pharmacy, Duane Reade Pharmacy (A Walgreens Pharmacy), EHiM, EMD Serono, Elwyn Specialty Care, Flowers Heritage Foundation, Forthright Strategies, HealthHIV, HMS, Housing Works, Genetech, GettingHired.com, Gilead Sciences, Great Lakes ADA Center, Janssen Therapeutics, Job Accommodation Network, Justin's Cafe, Kellari, Kimptons Hotels & Restaurants, Macsata-Kornegay Group, MedData Services, Merck, MOMS Pharmacy, Morgali Films, Mylan Pharmaceuticals, Napo Pharmaceuticals, Number 9, O.B. Sweet, OraSure Technologies, Patient Access Network Foundation, Patient Advocate Foundation, Pharmaceutical Research and Manufacturers of America, Philadelphia FIGHT, Pill Pack, Public Sector Solutions, Ramsell Corporation, The AIDS Institute, Theratechnologies, Social Security Administration's Ticket-to-Work, Southern AIDS Coalition, Southwest Airlines, Starbucks, SunTrust Bank, Turing Pharmaceuticals, Vertex Pharmaceuticals, ViiV Healthcare, Walgreens, We Movement, Wells Fargo, Women's Institute For A Secure Retirement, and World AIDS Institute.

But most of all, we would like to thank the thousands of individual supporters who joined our organization, attended our educational events, and/or donated to us. We couldn't have reached 10 years without you!