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!

AIDS Drug Assistance Programs in the Age of Trump's "Make America Great Again"

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

The ADAP Advocacy Association does not engage in any political activities, political campaigns, ballot initiatives, or federal lobbying activities for that matter. Our purpose is strictly to raise awareness, offer patient educational programs, and foster greater community collaboration. That said, many stakeholders in our circles are concerned about the forthcoming inauguration of the 45th President of the United States, and the implications on the future of the AIDS Drug Assistance Programs ("ADAP"), as well as the "public safety net" generally.

On World AIDS Day, our organization issued a strong statement to the incoming president. Turning back the clock is not an option.

Speaking about my own personal politics in my role as the CEO of the ADAP Advocacy Association is something that I do rarely, because I learned long ago not to allow my own personal politics to influence my responsibilities to the organization, or the people represented by the organization. In full disclosure though, I was part of the #NeverTrump and #StopTrump movements during the Republican presidential primary. I had concerns about Donald J. Trump when he was a candidate in the Republican primary, and those concerns persisted during the general election. Furthermore, I continue to have concerns about him now that he is the President-Elect. But...I'm willing to heed the words from Hillary Clinton delivered during her concession speech, "We owe him an open mind and a chance to lead."[1]

But another politician (whose name I will not say) rationally said in 1986, "Trust, but verify."[2]

Photo Source: Associated Press

In other words, I'm at the intersection between fear and hope. It is not a settling place because there are so many unknown pieces at play.

Ever since Trump's electoral win on November 8th, however, he has promised to repeal (and replace) the Affordable Care Act ("ACA") and thereby remove protections afforded to people living with HIV/AIDS; he has tapped a staunch anti-ACA congressman to lead the U.S. Department of Health & Human Services ("HHS") and thereby kill Medicaid expansion; he has deemed fit to select a man with no knowledge about housing policy to lead the U.S. Department of Housing & Urban Development ("HUD") and thereby potentially threatening important housing programs for our community (namely the Housing Opportunities for People with AIDS program, or HOPWA); and yet still he has not once uttered the words "HIV" or "AIDS since coming down that escalator in Trump Tower on June 16, 2015. The aforementioned are all red flags, but they don't even address his selection of the man who will be a heartbeat away from the Oval Office.[3] In other words, it stands to reason that the HIV/AIDS community is anxious about what lies ahead.

Ironically, patients — including people living with HIV/AIDS — may have something to be hopeful about because in an interview with TIME Magazine, President-Elect Trump put drug makers on notice over the rising cost of prescription drug prices. It was a warning to Wall Street that he repeated throughout the campaign trail.[4]

Trust, but verify! Right? Well...

It is incumbent upon the ADAP Advocacy Association, and its many various stakeholders to remain vigilant — especially during the Trump Administration's first 100 days in office, and the first year in office. It is important to remember that "Checks and Balances" remain, which makes reinforcing existing relationships with Members of Congress — and cultivating new ones — so important! And the latter has to be done with BOTH political parties, and not simply the one that you support. Sustain constant contact with the career civil servants working at HHS and HUD, among the many other federal departments and agencies. Engage at the state level by keeping open the lines of communication with governors and state legislators. But it is also equally important for stakeholders to maintain their composure during this process.

One thing is for certain...we have our work cut out for us! But remember that our community is strong, and we will persevere!

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[1] Vox, "Hillary Clinton’s concession speech full transcript: 2016 presidential election," November 9, 2016; available online at http://www.vox.com/2016/11/9/13570328/hillary-clinton-concession-speech-full-transcript-2016-presidential-election. 
[2] Wikipedia, "Trust but verify," November 26, 2016; available online at https://en.wikipedia.org/wiki/Trust,_but_verify. 
[3] Kaczynski, Andrew, BuzzFeed, "Here Is Mike Pence’s Questionable 2000 Proposal On HIV/AIDS Funding," July 14, 2016; available online at https://www.buzzfeed.com/andrewkaczynski/here-is-mike-pences-questionable-2000-proposal-on-hivaids-fu?utm_term=.cpRWEpXY9#.mfEmlovG9. 
[4] Egan, Matt, CNN Money, "Trump warns Wall Street: I'm going to cut drug prices," December 7, 2016; available online at http://money.cnn.com/2016/12/07/investing/trump-drug-prices-time-man-year-biotech/index.html. 

Why HIV Medical Treatment Guidelines Matter

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

As with all chronic diseases and conditions the approved medical treatment guidelines serve as an important marker, not only for patients and the medical professionals who treat them, but also the payors. This is certainly no different with HIV/AIDS. That is why the ADAP Advocacy Association is calling on the Health Resources and Services Administration ("HRSA") at the U.S. Department of Health & Human Services to update its treatment guidelines for HIV-associated lipodystrophy. HRSA's current guidelines need to correct a statement regarding growth hormone-releasing factor, because it does not accurately reflect the available treatment to patients suffering from lipodystrophy disease.

According to WebMD, "Lipodystrophy is a problem with the way the body produces, uses, and stores fat. It is also called fat redistribution. Since the widespread use of antiretroviral therapy began, the numbers of HIV-positive people with lipodystrophy has increased. Today, lipodystrophy occurs in 30% to 50% of people who are infected with HIV (human immunodeficiency virus)."[1]

The ADAP Advocacy Association has increasingly supported educational initiatives aimed at tackling HIV-related co-mordibities, as well as HIV-related stigma. Combatting lipodystrophy falls under both categories. Researchers have concluded lipodystrophy is associated with increased rates of hypertension, diabetes, and lipids for patients experiencing lipodystrophy. Furthermore, long term psychological affects are present among patients, especially among those patients age 65 and older.[2]

Lipodystrophy is more than a cosmetic issue, especially for the HIV-positive patients living with the disease. For example, people living with HIV often believe the doughy fat around their midsection can be addressed by a healthy diet and exercise alone. But diet and exercise may not be enough to combat the challenges associated with visceral adipose tissue ("VAT"). The "Don’t Take VAT" website – www.DontTakeVAT.com – includes fact sheets about VAT and healthy living with HIV, as well as a video that provides a deeper look at VAT and tips about what to ask your doctor.

[Editor's Note: Read our related blog, "HIV-Related Belly Fat: More Than Just an Appearance Issue"]

But more needs to be done, frankly!

In 2010, the U.S. Food & Drug Administration ("FDA") approved Tesamorelin (trade name Egrifta) as treatment for lipodystrophy. Whereas some private health insurance plans cover this treatment option, public payors mostly don't cover it. Only three State AIDS Drug Assistance Programs ("ADAP") include Tesamorelin on its approved drug formulary, including Minnesota (though it requires a prior authorization), New Jersey, and Washington State. Not a single Medicaid program includes Tesamorelin on its Preferred Drug List ("PDL"). By restricting access to an FDA-approved treatment represents a disservice to the patients suffering from HIV-associated lipodystrophy.

Ironically, some states cite "cost" as the prohibitive factor for the reason lipodystrophy treatment isn't added to their approved drug formulary or PDL. Yet, other costly (and still needed) supports and services are covered -- such as counseling, physical therapy, and in some cases, surgery.

Photo Source: GLAD

That is why HRSA should update its "Guide for HIV/AIDS Clinical Care." It would provide better guidance for ADAPs nationwide seeking the necessary budgetary justification for adding Tesamorelin to its approved drug formulary. It is the only treatment available to these patients, and they are crying out for help! To read the draft letter to HRSA requesting an update to the medical treatment guidelines, CLICK HERE.

This effort shouldn't be interpreted as an endorsement of the particular product, Tesamorelin. The simple fact is Tesamorelin is the only product on the market approved by the FDA used in the treatment of HIV-associated lipodystrophy. Talk to patients who are living with HIV-associated lipodystrophy, and listen to their stories about the physical discomfort associated with the disease, or the stigma that they encounter on a daily basis living with the physical disformity caused by the disease.

Massachusetts is already leading the way to improve access to care and treatment for people living with HIV-associated lipodystrophy. The Treat Lipodystrophy Coalition fought tirelessly for the law to require insurance coverage for treatment of a debilitating and disfiguring side effect of HIV medications. Patients living with HIV-associated lipodystrophy are now demanding the same be done with public payors, such as ADAP and Medicaid.

Summarized Carl Sciortino, executive director for the AIDS Action Committee, and former representative in the Massachusetts Legislature who introduced the aforementioned legislation: "Some of our long-term survivors carrying the physical scars of earlier life-saving treatments have been denied the dignity and medical treatment they are entitled to for far too long. Lipodystrophy affects our veterans, and as a country we have effectively turned our backs on their need to treat their epidemic-inflicted wounds. I'm proud of our step forward in providing insurance coverage in Massachusetts, and I'm grateful for any interest it sparks in providing care to people living with HIV across the country."

To endorse this effort by adding your organization to the ADAP Advocacy Association's national sign-on letter, CLICK HERE. The deadline for signing on to the letter is COB on Monday, November 7, 2016.

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[1] WebMD, "Lipodystrophy and HIV," 2016; available online at http://www.webmd.com/hiv-aids/guide/lipodystrophy_and_hiv.
[2] Mascolini, Mark, "HIV Drug Therapy, Glasgow Oct 23-26 2016," NATAP, 2016; available online at http://www.natap.org/2016/GLASGOW/GLASGOW_18.htm. 

How North Carolina Legalized Syringe Exchange Programs

By: Tessie Castillo, Communications and Advocacy Coordinator, North Carolina Harm Reduction Coalition (NCHRC)

In July 2016, North Carolina accomplished what many said could never be done – we legalized syringe exchange programs, which are proven to lower HIV and hepatitis C rates among people who inject drugs.

It took many years of planning and effort, as well as strategic partnerships with a variety of stakeholders to move the needle on this issue. We’d like to share a few of the strategies that worked well so that other advocates hoping to change hearts and minds on HIV prevention and harm reduction issues can use the lessons we have learned.

1. Craft a clear, concise message and choose the right messenger. The message around syringe exchange programs (SEPs) is pretty simple:

• SEPs lower HIV and hep C for the community;
• SEPs are a portal to treatment for people who are marginalized from health care and recovery programs; and
• SEPs lower needle-stick injury to LEOs by 66%.

We hammered home these three points in presentations, OpEds, media interviews, conversations with stakeholders, and everywhere else we could think of. Choosing the messenger required a bit more work. Since law enforcement had been the biggest opponent to syringe exchange programs in previous years, they were the perfect messengers.

We began setting up meetings with Chiefs of Police and Sheriffs, focusing primarily on those who had or wanted to start naloxone programs, since they seemed more sympathetic to nontraditional approaches to problems associated with drug use. After explaining our three points above, the majority (about 90%) of the law enforcement we talked to agreed that SEPs were a good idea. We asked them for a 2-3 sentence quote on why they supported SEPs and compiled all the quotes onto one page, which we presented during every meeting with every legislator over the next few months. This quote sheet was magic. MAGIC. It was the number one thing that took legislators from opposed or squeamish about syringe exchange programs to fully on board. It also neutralized opposition from law enforcement lobby groups, who had previously been vocally opposed to syringe exchange programs.

2. Choose the appropriate legislative sponsor. Legislative sponsors, the people who actually introduce your bill into the House or Senate, are very important. One of the ugly truths of politics is that so many bills go through the legislature per session, legislators don’t have time to read them all. Often, they just look at the bill sponsor. If it is someone they respect and usually agree with, they will vote for the bill. Knowing this, we carefully selected our bill sponsors as people who were from the majority party and trusted among their peers.

3. Create a list of target legislators and convince them to support the bill. Months before the start of session, we sat down with our primary bill sponsor and created a list of legislators who were likely to influence our bill because:

• They were the chairs of committees the bill would likely go through;
• They were well-known for legislation on drug/medical issues;
• They were likely to oppose the bill and others listen to them;
• They have a lot of influence at the legislature; and/or
• They have a medical/law enforcement background.

The goal was to have these legislators on our side, or at least not opposed to the bill, prior to the start of session. As mentioned above, legislators tend to follow the votes of other people they respect. If you can find and convince these few influential legislators, you have the votes of a lot of others as well.

After getting a list of target legislators (only about four) from our sponsor, we created strategies to seek their support for the bill. We flooded their newspapers with OpEds and articles in favor of syringe exchange. We sat down with the Chiefs of Police and Sheriffs in their district to get quotes for our quote sheet. We met with their health directors, heads of drug treatment centers and pastors from the larger churches. It was not until we had a robust group of influential constituent supporters that we reached out to the actual legislators. This process took months of work, but it was well worth the effort. We invited the targeted legislators to meetings attended by all the supporters we had cultivated in their districts so that they could hear from their own constituents why SEPs are a good idea. The outcome of the meeting was usually decided before the legislator even walked in the door.

4. After introducing the bill, don’t slack on the leg work. By the time the legislative session actually started, we were in pretty good shape. Our law enforcement quote sheet was growing and working wonders. We had also successfully convinced the majority of our target legislators to support the bill. Once the bill was actually introduced, the rest was leg work – we met with the legislators on every committee that the bill went through to ask them to vote for the bill. We created informational flyers that we passed out to all other legislators. We urged constituents through listserv emails to contact their legislators and ask for their vote. When problems came up and the bill stalled, as it did many times, we kept urging the legislators, especially the sponsors and key supporters, to keep trying and asked our listserv allies to keep making calls. (There is a fine line between being persistent and being pushy, but we tried not the cross that line).

Eventually, the work paid off. In July 2016, Governor McCrory signed the first law legalizing syringe exchange programs in North Carolina. In just two months, over a dozen syringe exchange programs have popped up all over the state and more organizations are coming forward expressing interest in starting one. Hopefully advocates in other states can learn from NC and succeed in their own campaigns to legalize syringe exchange programs.

That’s the bare bones explanation of how we legalized syringe exchange programs in North Carolina. Click here for a more narrative version of the process.

Fact sheets and other materials to help advocate for syringe exchange programs (including the law enforcement quote sheet) are available here: http://www.nchrc.org/syringe-exchange/factsheets-on-syringe-exchange/.

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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.

Magnifying How ADAP Provides Treatment For People Living With HIV/AIDS

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

On September 23rd and 24th, "Magnifying How ADAP Provides Treatment For People Living With HIV/AIDS" took center stage at the ADAP Advocacy Association's 9th Annual ADAP Conference in Washington, DC.  The conference convened numerous ADAP stakeholder groups — including patients, service providers, health departments, pharmacies, pharmaceutical companies, and advocacy organizations — to discuss the current and emerging public policy issues confronting the AIDS Drug Assistance Program (ADAP), as well as exchange ideas and develop strategies for effective patient self-advocacy.

The conference kicked off with some exciting news about the organization's flagship program; the ADAP Directory. The ADAP Directory — which was launched in 2014 — takes an innovative approach to linking people living with HIV-infection to the information, resources, medical care, and treatment options. Now, it offers an interactive feature called the ADAP Eligibility Calculator powered by PillPack.

The opening keynote was delivered by Dr. Mike Magee, President of Positive Medicine, who is a longtime friend of the ADAP Advocacy Association (Editor's Note: It was 2007, when Dr. Magee delivered the opening keynote at the organization's first annual conference). His remarks, "Blending Positive Leadership and Advocacy: A Case for Advanced Professionalism," drew heavily from a book published by his son, Michael,  some years earlier, entitled “Emancipating Pragmatism: emerson, jazz, and experimental writing.” Dr. Magee's keynote conveyed several key points. Among them are positive leadership, and islands of common stewardship. To read Dr. Magee's recap of his experience in his blog post at Health Commentary, CLICK HERE.

Follow Dr. Mike Magee on Twitter!

The conference offered up seven panel discussions, each playing an important role in magnifying how ADAP provides treatment for people living with HIV/AIDS. The conference leveraged an Oprah-style format designed to promote a “conversation” rather than a traditional presentation-type session; therefore, the panelists were encouraged to speak from the heart rather than using scripted remarks/presentations.

The conference panels included:

• HIV & Aging: Building a Focus on Healthy Aging for Older Adults Living With HIV/AIDS
• Affordable Care Act: AIDS Drug Assistance Programs & Qualified Health Plans
• Affordable Care Act: Marketplace Cost Sharing & Barriers to Healthcare
• Linkages to Care: Social Workers & HIV Community Resources
• Linkages to Care: 340B Program & HIV Continuum of Care
• HIV & Marginalized Communities: Delivering Culturally Competent Care
• Co-Infection: Integrating HCV Services into HIV Prevention/Care Settings

The conference attendees were provided an abundance of supporting materials, which can be downloaded online here. By the time the conference had concluded there were numerous take-aways that will be orchestrated by the ADAP Advocacy Association over the coming weeks and months.

Thank you to all who supported the conference, presented at it, and most importantly, attended it!