Thursday, August 16, 2018

An Inherent Value in Advocacy Partnerships

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

As we've witnessed our national dialogue boil over into "us versus them" or "red versus blue" or "urban versus rural" or the even more egregious "you're either with us or you're against us", it is important to remember there is an inherent value in advocacy partnerships. It is even more important for the HIV advocacy community to continue to leverage broad partnerships, rather than retreat into corners. Adopting the latter approach would surely result in less potent national and state-level advocacy, fewer programmatic outcomes, and far less access to care and treatment for the patients who need it.

The ADAP Advocacy Association has long boasted in its tag line that it "works with advocates, community, health care, government, patients, pharmaceutical companies and other stakeholders." Yet, all too often, some question why one group or another is invited to sit our communal table. Unfortunately, it is happening more so in recent years. It is a troubling trend, no doubt.

Our organization's primary audience is the patient. One of our core value statements is that the voice of individuals living with HIV/AIDS shall always be at the table and the center of the discussion. All too often the patient voice is pushed aside, or not even included in important conversations because they're characterized as "bitching and moaning" rather than proposing solutions. But haven't patients earned that right, because after all they're the ones living with the damn disease? That said, such an narrow attitude under-estimates the valuable contributions made by patients every single day!


Likewise, state health department employees aren't the enemy. They are our partners and if state agencies are doing something counterintuitive to promoting greater access to care and treatment, then it is the advocacy community's and patient community's role to engage them. Joey Wynn, who serves as a board member to this organization, routinely engages state agencies in Florida...including when those same agencies are doing something the local advocacy community finds potentially harmful. Joey's approach has served people living with HIV/AIDS in South Florida rather well, too. In fact, I've personally witnessed the effectiveness behind his approach at a town hall meeting in Miami (as seen above when Joey invited me to speak), as well as his past leadership with the Florida HIV/AIDS Advocacy Network ("FHAAN").

Beating up on pharmaceutical companies is easy, and it most certainly is a popular thing to do. Yet, it is indeed possible to push back on the high cost of prescription drug prices while simultaneously working with these same partners to fight harmful public policy proposals, such as federal budget cuts, or the dangerous idea of drug importation.

Rev. William Barber II at Moral Monday rally in North Carolina
Photo Source: Wikipedia

Nashville, Tennessee-based advocate and social media guru Josh Robbins is prime example! Josh has partnered with numerous private entities  such as medical diagnostic companies and pharmaceutical companies  and various public agencies  including health departments  to promote a litany of public health initiatives ranging from National HIV Testing Day, U=U, and access to PrEP. His groundbreaking work in Tennessee could not have been achieved operating from a silo.

Wanda Brendle-Moss, who also serves as a board member to this organization, recently reflected on her HIV advocacy journey. Wanda has demonstrated that collaboration is an effective advocacy tool in North Carolina, evidenced by her relationships with the North Carolina AIDS Action Network, North Carolina Harm Reduction Coalition ("NCHRC"), and the Rev. William Barber II's Moral Mondays (as seen in the photo above). Wanda would work with anyone who will answer her phone call, email, or text!

Speaking of North Carolina and NCHRC, under the leadership of the former executive director, Robert Childs, progressive harm reduction policies were adopted in a conservative state with an even more conservative General Assembly. Such legislative victories in the state included achieving syringe exchange programs, expanded Naloxone access, Good Samaritan protections, prescription drug monitoring programs, among other things. How? It was the advocacy partnerships developed by NCHRC, including with some VERY unlikely allies.

Nationally, efforts such as the ongoing U=U campaign ("Undetectable = Untransmittable") to reduce HIV-related stigma could not have happened without Bruce Richman's steady leadership. It isn't surprising that Bruce has assembled an extremely broad coalition of community partners, representing all stakeholder groups.

The most effective advocacy is rooted in advocacy partnerships, and not rivalries. With the current occupant residing at 1600 Pennsylvania Avenue being so unfriendly to our community, such advocacy partnerships are even more important now!

Friday, August 10, 2018

Award Honorees Embody Our Commitment to the Public Health Safety Net

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

The ADAP Advocacy Association announced earlier this week the honorees for its Annual ADAP Leadership Awards, which recognize individual, community, government and corporate leaders who are working to improve access to care and treatment for people living with HIV/AIDS  including under the AIDS Drug Assistance Program (ADAP). The 2017-2018 award honorees reflect the theme of the organization's 11th Annual ADAP Conference, “Mapping a New Course to Protect the Public Health Safety Net,” being held in next month in Washington, DC.

As in years past, it is always difficult selecting the honorees for the various awards because so much amazing work continues to be done fighting the HIV/AIDS epidemic. But some work always stands out and it deserves our recognition! It is our way of saying, thank you.

aaa+ Leadership Awards

The following awards will be presented during the Annual ADAP Leadership Awards Dinner, which will be hosted on Friday, September 21st:
  • “William E. Arnold” ADAP Champion awarded to Evelyn Foust, Director of the North Carolina DHHS Communicable Diseases Branch. Evelyn has been instrumental in the implementation of the ADAP premium assistance in the state. 
  • ADAP Corporate Partner awarded to Lambda Legal for their tireless work on behalf of so many people living with HIV/AIDS, including most recently with Harrison v. Mattis & Doe v. Mattis
  • ADAP Lawmaker awarded to the Honorable John McCain, Arizona’s senior U.S. Senator, for his courageous thumbs down vote against repealing the Affordable Care Act. Sen. McCain's surprise vote ensured countless people living with HIV/AIDS continued to receive care. Former President Barack Obama even called McCain to thank him!
  • ADAP Community Organization awarded to the Community Research Initiative ("CRI"), based in Boston, MA. CRI embodies the community-based focus that has long been associated with appropriate and timely access to care and treatment for people living with HIV/AIDS. Serving over 12,000 clients in the greater metropolitan area of Boston, CRI not only manages Massachusetts’ AIDS Drug Assistance Program, but it has also been on the front lines in fighting Hepatitis C, training service providers on culturally competent care, and advocating for successful prevention strategies, just to name a few. Learn more at https://crine.org
  • ADAP Social Media Campaign awarded to Jennifer Vaughan for her YouTube channel,"Jennifer’s Positive HIV Life,"with over 10,000 subscribers and with almost 2 million views on her 90+ videos about living with HIV/AIDS.
Information about the awards (including former honorees) is listed online at  www.adapadvocacyassociation.org/awards.html.

Tickets for the awards dinner can be purchased online. This year's awards dinner will be headlined by the one and only, Josh Robbins (who also happens to be a past award honoree).

Congratulations to the honorees of the 2017-2018 ADAP Leadership Awards!

Thursday, August 2, 2018

Reflections from an HIV Advocate's Journey: Wanda Brendle-Moss

By: Wanda Brendle-Moss, Board Member, ADAP Advocacy Association

It amazes me when people praise me for “being so brave" for telling my story, or this one: "I can never do what you do!” But here is the truth; I was diagnosed with HIV in July 2002, with AIDS in May 2008 (and that’s another story to be shared later), yet my advocacy journey didn’t start until I became homeless in December 2009. It took me SEVEN years to find my bravery. My local AIDS Service Organization placed me in transitional housing and unknown to them, it gave me courage to start a new and exciting journey.

Wanda Brendle-Moss
Photo Source: HIVPlus Magazine

Upon reflection, social media made it easier for me to find my footing in the advocacy world. I volunteered during AIDS 2012 after many months of joining in social media advocacy. Yet, even still I was still tentative in calling myself an advocate. I added my name to the email lists of all the top national HIV advocacy groups, including that of ADAP Advocacy Association (aaa+). This one was important to me personally because North Carolina was having all sorts of problems and it led to issues for those of us dependent on ADAP funding to receive our meds! At one time, North Carolina had one of the largest ADAP waiting lists, too.

In 2013, I attended my very first ADAP Conference after the ADAP Advocacy Association extended a scholarship to me. I was the ONLY attendee from my state! I felt so overwhelmed, yet at same time felt a tiny flicker of determination being born! Brandon Macsata, who I was in awe of because he ensured patients are front and center, offered me much encouragement to “spread my advocacy wings”, and to not be afraid to “just do it”! That encouragement started me on journey to the advocate many of you know today. Years later, Brandon was so impressed with my growth as a self advocate that he asked me to join the organization’s board of directors!

I’ve learned that advocacy cannot be dictated by anyone, or any organization. We are all different, and we have different ways of engaging in the fight to end the epidemic. It is troubling to see some organizations shut out the patient voice, while others use it to protect systems rather than people. Each of us living with or impacted by HIV must learn how to be advocates. Blogging may not be for you. Protesting might not be a good fit for you. Meeting one-on-one with lawmakers may intimidate you. And that is okay! There are still days when I wonder if I am a worthy advocate, and I reflect: YES I AM

All these words are simply meant to encourage you to take that leap of faith and believe in yourself, even through the setbacks! Get online and join listservs of organizations who do the work you’re passionate about! Take that first step and before you know it you will be telling your story!

I look forward to meeting you as our advocacy journeys cross paths!

Thursday, July 26, 2018

Blueprint to Lower Drug Prices and Reduce Out-of-Pocket Costs

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

In May 2018, drug pricing took center stage as the U.S. Department of Health & Human Services released its proposed Blueprint to Lower Drug Prices and Reduce Out-of-Pocket Costs. It what has been characterized as "a way forward in fight against mushrooming costs,"[1] HHS has set the stage for an extremely important debate...and likely the most contentious battle on health policy since passage of the Affordable Care Act.

Drug Prices
Photo Source: NBC WPSD-6

According to the Notice published in the Federal Register, HHS' blueprint covers multiple areas including, but not limited to:[2]
  • Improving competition and ending the gaming of the regulatory process,
  • supporting better negotiation of drug discounts in government-funded insurance programs,
  • creating incentives for pharmaceutical companies to lower list prices, and,
  • reducing out-of-pocket spending for patients at the pharmacy and other sites of care.
Comments on the blueprint were due on or before July 16, 2018.

The ADAP Advocacy Association endorsed two coalition letters submitted to HHS.

One letter, spearheaded by the Patient Access Network Foundation (PAN), "cautions against HHS undertaking policy changes without evidence-based research. HHS must be confident that any changes it makes will have the intended positive impact on individuals and families, with no unintended consequences that could harm patients and make prescription drugs less affordable and accessible."[3] PAN's letter was signed by 52 patient advocacy organizations, representing millions of patients with serious, life-threatening, chronic, complex and disabling conditions.

The other letter was a collaborative effort led by the HIV Health Care Access Working Group (HHCAWG), which represents over 100 national and community-based HIV service organizations representing HIV medical providers, public health professionals, advocates, and people living with HIV who are all committed to ensuring access to critical HIV- and Hepatitis C-related health care and support services.

We have compiled a listing of the comments submitted by some other organizations, which are available to download here:

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[1] Aronson, Lauren (2018, July 13). Blueprint to Lower Drug Prices could offer a way forward in fight against mushrooming costs. The Hill. Retrieved online at http://thehill.com/blogs/congress-blog/healthcare/396883-blueprint-to-lower-drug-prices-could-offer-a-way-forward-in.
[2] A Notice by the Health and Human Services Department (2018, May 16). HHS Blueprint to Lower Drug Prices and Reduce Out-of-Pocket Costs. Retrieved online at https://www.federalregister.gov/documents/2018/05/16/2018-10435/hhs-blueprint-to-lower-drug-prices-and-reduce-out-of-pocket-costs.
[3] Naples, Maggie (2018, July 17). National Patient Advocacy Organizations Come Together to Respond to the HHS Blueprint to Lower Drug Prices and Reduce Out-of-Pocket (OOP) Costs. Patient Access Network Foundation. Retrieved online at https://panfoundation.org/index.php/en/about-us/media-room/national-patient-advocacy-organizations-come-together-to-respond-to-the-hhs-blueprint-to-lower-drug-prices-and-reduce-out-of-pocket-oop-costs.

Thursday, July 19, 2018

UPDATE: Hey Trump! Hands Off Our Ryan White HIV/AIDS Program!

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

The ADAP Blog last week addressed troubling news that the U.S. Department of Health & Human Services ("HHS") planned to divert funds from existing programs to pay for the rising cost associated with the Trump Administration's controversial "zero-tolerance" immigration policy. This statement was indeed true (as fact checked by Snopes),[1] though fortunately the impact is debatable since none of the diverted funding came from the current year's program. What it did accomplish was to ignite a firestorm among many in the HIV grassroots community.

Snopes: True

The good news, especially for the HIV grassroots community, is none of the transferred funding will impact Ryan White-funded supports or services to people living with HIV/AIDS for the current program year. The transfer included expired Ryan White funds from FY 2016, which hadn't been spent and was due to be returned to the U.S. Treasury. Basically the news is still bad, but not nearly as bad as initially thought.

Though news about HHS transferring funds only broke last week by Slate, it has subsequently been determined that the transfer request was made in January 2017. As reported by POLITICO, nearly $200 million in funds were moved to address the refugee crisis, including "at least $17 million in unspent funds on the Ryan White HIV/AIDS program."[1]

Emily Holubowich, executive director of the Coalition for Health Funding, raised an excellent point in the POLITICO article when she argued, "If there’s leftover money from Ryan White, it should go to support programs for poor people with HIV and AIDS, not this outrageous separation policy."[3]

This point is exactly why the flames are still burning among many grassroots activists at the state and local levels. It begs the question, couldn't those Ryan White dollars have been used to expand drug formularies under the AIDS Drug Assistance Programs ("ADAP") to pay for anti-diarrhea medications, or Hepatitis C ("HCV") therapies for people co-infected with HCV, or lipodystrophy treatments? These concerns were spelled out in a blog earlier this year.

Donald J. Trump
Photo Source: NY Magazine

Furthermore, at what point does the HIV community draw a red line with the Trump Administration and its Family-Research Council ("FRC") cronies known for their anti-immigrant, racist, homophobic, and misogynistic views? This Administration has been attacking people living with HIV/AIDS for the last eighteen months by proposing harsh federal budgetsdemonstrating a flagrant disregard for the public health systemignoring key leadership postssanctioning discrimination by healthcare workersundermining the Patient Protection and Affordable Care Act, and most recently deleting 20 years of critical medical guidelines. Make no mistake...Trump and the FRC have brought the fight to people living with HIV/AIDS.

Overall the Ryan White program, in general, and ADAPs, specifically, are extremely well-run programs. This is a message that the community should embrace, and not run away from out of fear. The best defense is a good offense!

__________

[1] Garcia, Arturo (2018, July 13). Are Federal HIV Treatment Funds Being Used for Immigrant Internment? Snopes. Retrieved from: https://www.snopes.com/fact-check/hiv-treatment-funds-immigrants/.

[2] Diamond, Dan (2018, July 18). Trump’s migrant fiasco diverts millions from health programs. POLITICO. Retrieved from: https://www.politico.com/story/2018/07/18/trump-migrants-health-programs-692955.
[3] Diamond, Dan (2018, July 18). Trump’s migrant fiasco diverts millions from health programs. POLITICO. Retrieved from: https://www.politico.com/story/2018/07/18/trump-migrants-health-programs-692955.

Thursday, July 12, 2018

Hey Trump! Hands Off Our Ryan White HIV/AIDS Program!

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

Earlier this week, Slate reported that the U.S. Department of Health & Human Services ("HHS") planned to divert funds from existing programs to pay for the rising cost associated with the Trump Administration's controversial "zero-tolerance" immigration policy. The policy, which separates children from their families on the southern border, is overseen by the HHS Office of Refugee Resettlement, and it is burning through so much cash that it needs more. In the crossfire is millions of dollars in funding designated for HIV/AIDS services under the Ryan White CARE Act.[1]

According to the reporting by Slate, HHS is planning for a surge in immigrant minors over the next three months:[2]
"The internal documents estimate that if 25,400 beds are needed, ORR would face a budget shortfall of $585 million for ORR in fiscal year 2018, which ends on Sept. 30. Under this scenario, that shortfall would increase to $1.3 billion in the first quarter of fiscal year 2019, adding up to a total shortfall of $1.9 billion for the period between Oct. 1, 2017, and Dec. 31, 2018. The documents stress that these budget estimates represent maximum possible expenditures and that actual expenses may be lower. The Department of Health and Human Services did not respond to multiple requests for comment about these figures or anything else relating to the documents."
In order to offset the budgetary shortfall, HHS will seek supplemental appropriations from Congress, as well as reallocate existing funds from within the department  including Ryan White funding. Slate's reporting also indicates the process of transferring those HIV/AIDS funds is underway.

The ADAP Advocacy Association has strongly condemned this decision. In an era when people living with HIV/AIDS are already facing enough uncertainty over the current government's commitment to fighting the epidemic, it was the latest setback to achieving an AIDS-free generation.


The pushback from a leading national patient advocacy group was swift when news broke that the Trump Administration would use Ryan White HIV/AIDS program dollars to fund its widely unpopular family separation policy at the southern border. AIDS United CEO Jesse Milan, Jr. issued a strongly-worded statement on the funding reallocation:[2]
"As a payer of last resort, the Ryan White Program covers services for people that have no other means to pay for them. Any shortages in funding to the program would result in essential services not provided to potentially thousands of Americans. This could mean people not receiving life-saving medications or losing insurance coverage because funding was not available to cover their premiums. For an administration that just recently proclaimed its commitment to ending the HIV epidemic in this country, stripping funding from the largest HIV-specific federal program defies all logic."
The fact that the money being diverted is "unspent" money makes no difference to people living with HIV/AIDS who rely on Ryan White-related supports and services. There are always creative ways to spend or transfer federal money within an agency's budget,[4] because it happens all of the time. And considering there are ongoing challenges facing ADAP consumers limiting their access to care, such as restrictive drug formularies, that money should be spent on people living with HIV/AIDS. (Editor's Note: Read our previous blog on open drug formularies, "ADAP Open Drug Formulary Programs Improve Access to Care & Treatment; So why are there so few?")

Numerous national LGBTQ groups also condemned the news, including Lambda Legal and Human Rights Campaign. It appears that this development is fluid, and we will continue to closely monitor it.

__________

[1] Stern, Mark Joseph. (2018, July 10). Trump’s Office of Refugee Resettlement Is Budgeting for a Surge in Child Separations. Slate. Retrieved from: https://slate.com/news-and-politics/2018/07/trumps-office-of-refugee-resettlement-is-budgeting-for-a-surge-in-child-separations.html
[2] Stern, Mark Joseph. (2018, July 10). Trump’s Office of Refugee Resettlement Is Budgeting for a Surge in Child Separations. Slate. Retrieved from: https://slate.com/news-and-politics/2018/07/trumps-office-of-refugee-resettlement-is-budgeting-for-a-surge-in-child-separations.html
[3] Milan, Jr., Jesse. (2018, July 10). AIDS UNITED STATEMENT ON TRUMP ADMINISTRATION PLANS TO REALLOCATE RYAN WHITE FUNDING FOR CHILD SEPARATION TIED TO ZERO TOLERANCE BORDER POLICY. AIDS United. Retrieved from: https://www.aidsunited.org/News/Default.aspx?id=1197
[4] EveryCRSReport.com (2013, June 6). Transfer and Reprogramming of Appropriations: An Overview of Authorities, Limitations, and Procedures. R43098. Retrieved from https://www.everycrsreport.com/reports/R43098.html.

Thursday, July 5, 2018

Linkages to Care During Post-Incarceration

By: Jonathan J. Pena, intern, ADAP Advocacy Association, and rising junior in social work, North Carolina State University

The ADAP Advocacy Association late last year announced its Correctional Health Project, which aims to raise awareness about issues confronting formerly incarcerated populations living with HIV/AIDS (and/or Hepatitis C) who also access care and treatment (or whom could benefit from such care and treatment) under the AIDS Drug Assistance Program ("ADAP"), as well as provide useful resources and tools to the communities serving them. A subsequent blog also focused on the issue. While this approach is an effort to sharpen the scope and need for access to care and treatment for HIV-infection (and/or HCV) among formally incarcerated populations, it is equally important to widen to the lens just for a minute in order to see where we stand globally on the issue of incarceration.

Incarceration rates are highest in the United States out of any country, which translates to 910 per 100,000 adults.[1] When you factor in the 1.2 million people living with HIV in the U.S, a sixth of this population are entering prisons and jails and also transitioning back into their communities.[2] This sets the stage for an enormous request to address the needs of these populations so that the public health system may begin to seal the cracks that they fall through by utilizing accurate assessments and combining it with proactive case management in order to link them to care.

Programs do exist, such as State ADAPs, which are designed to assist these individuals. But the most recent National ADAP Monitoring Project demonstrates that ADAPs are assisting some of these individuals, it is also clear more can be done to assist them. The National AIDS Strategy also provides some guidance to help formerly incarcerated populations achieve viral suppression.

Viral suppression is crucial for HIV-positive ex-offenders during post-incarceration but the challenges that they face can seem monstrous and when faced with so many immediate competing needs like housing, food and transportation, continuity of viral suppression may fall by the waste side. Very often the linkage to care is lost for these populations due to poor discharge planning and thus limited access to quality based community programs. As a result the natural onset of vulnerability that is placed on an HIV-positive ex-offender is amplified when re-entering their communities that the possibility for them to engage in risky behavior like drug use, and transactional unprotect sex to maintain goods increases. These negative affects of poor discharge planning not only hurts the ex-offender but also hurts those within their community with other possible new cases of infection if they are not adherent to their medication.

Staying Strong Inside
Photo Source: SERO

Jails and prison systems are such dynamic institutions that they face additional compounding challenges to providing heath services other than HIV. With such a revolving door, these institutions have to tackle issues like addiction and mental illness. However, what seems to be alarming is the rate of HCV infections. A team of researchers at the National Drug and Alcohol Research Centre at the University of New South Wales in Sydney pooled together a series of data from 196 countries spanning from 2005 through 2015 that aimed at determining the number of inmates with HIV, hepatitis B virus, hepatitis C virus, and TB. This data indicated that out of 10 million inmates, HCV ranked at the top with 15.1% of infections and with HIV estimated at 3.8% of infections.[3]

As the ADAP Advocacy Association's Correctional Health Project continues to take shape, it is important to convey some of the needs driving our interest behind it. Important community resources will be made available in a few months.

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[1]  The Lancet HIV. (2017, November 27). Predictors of linkage to HIV care and  suppression after release from jails and prison: a retrospective cohort study. Retrieved from: https://www.thelancet.com/journals/lanhiv/article/PIIS2352-3018(17)30209-6/fulltext?code=lancet-site
[2] The Lancet HIV. (2017, November 27). Predictors of linkage to HIV care and  suppression after release from jails and prison: a retrospective cohort study. Retrieved from: https://www.thelancet.com/journals/lanhiv/article/PIIS2352-3018(17)30209-6/fulltext?code=lancet-site
[3] HIVandHepatitis. (2016, September 07). AIDS 2016: Neglect of Infectious Disease in Prisons Highlighted at Conference. Retrieved from: http://www.hivandhepatitis.com/hiv-epidemiology/5845-aids-2016-neglect-of-infectious-disease-in-prisons-highlighted-at-conference




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.