By: Brandon M. Macsata, CEO, ADAP Advocacy Association
The ADAP Advocacy Association hosted an HIV/AIDS "Fireside Chat" retreat in Detroit, Michigan among key stakeholder groups to discuss pertinent issues facing people living with HIV/AIDS. The Fireside Chat took place on Thursday, June 20th, and Friday, June 21st. Safe Medicines, HIV Criminalization, and the Ryan White HIV/AIDS Program ("RWHAP") were dissected by 24 diverse leaders in the fight against the HIV/AIDS epidemic.
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| Photo Source: Getty Images |
The Fireside Chat included moderated white-board style discussion sessions on the following issues:
- Safe Medicines: Combatting the Dangerous Foothold Counterfeit Medicines Have Gained in the U.S., moderated by Shabbir Safdar
- HIV Criminalization: Ending the Stigmatization of the HIV/AIDS Epidemic, moderated by Robert Suttle
- Ryan White Program: Impact to Service Delivery under Trump’s Plan to Eliminate AIDS by 2030, moderated by Jeffrey S. Crowley
The discussion sessions were designed to capture key observations, suggestions, and thoughts about how best to address the challenges being discussed at the Fireside Chat. The following represents the attendees:
- Khadijah I. Abdullah, Founder & Executive Director, RAHMA & National Faith HIV/AIDS Awareness Day
- Marjorie Ambrosio-Whitson, Vice President of Clinical Operations, ScriptGuideRx
- Guy Anthony, President & CEO, Black, Gifted & Whole Foundation
- William E. Arnold, President & CEO, Community Access National Network (CANN)
- Olivier Bahizi, Advocate
- Hala Bazzi-Lang, PharmD. RMGO, Local Specialty Registered Store Manager, Walgreens
- Elmer Cerano, Retired & Board Member, ADAP Advocacy Association
- Noel Chavez-Guizar, Clinic Case Manager, Rocky Mountain CARES
- Tori Cooper, Founder & Executive Director, Advocates for Better Care Atlanta
- Jeffrey S. Crowley, Distinguished Scholar & Program Director at the Infectious Disease Initiatives, O'Neill Institute for National and Global Health Law, Georgetown Law
- Chris E. Davis, Attorney, Michigan Protection & Advocacy Service (MPAS)
- Terry-Ann Francis, MPH, Global Professional Relations & Independent Medical Education, Global Medical Affairs, Merck
- Stephen Hourahan, Consultant
- Lisa Irwin, Senior Manager, Project & Program Management, MagellanRx
- Brandon M. Macsata, CEO, ADAP Advocacy Association
- Stephen Novis, Government Relations Director, ViiV Healthcare
- Murray C. Penner, Executive Director – North America, Prevention Access Campaign - U=U
- Ioana Popa-Simil, Advocate
- Alan Richardson, Executive Vice President of Strategic Patient Solutions, Patient Advocate Foundation
- Josh Robbins, Owner, BNA Talent Group & The BRANDagement
- Shabbir Imber Safdar, Executive Director, Partnership for Safe Medicines
- Robert Skinner, President & CEO, Valley AIDS Information Network
- Robert Suttle, Assistant Director, SERO Project
- Ian Wendt, Executive Director, HIV Community Operations, Gilead Sciences
The ADAP Advocacy Association is pleased to share the following brief recap of the Fireside Chat.
Safe Medicines:
According to Shabbir Safdar, 2019 has been an interesting year legislatively for the issue of pharmaceutical supply chain safety. Bills to attempt to legislate Canadian drug importation have been proposed in Utah, Colorado, Oregon, Missouri, Florida, Connecticut, and Maine. Bills have passed state legislatures in Colorado and Florida. These proposals attempt to create a pipeline of excess medicine, not needed by the Canadian population, to American patients.
One key question asked was can this work or are these bills actually implementable?
Prior experiments were reviewed, including: What has been the experience of other states that have implemented importation? Did it get used? Does it save money? What has changed about the market since the last programs in 2000-2010?
- Illinois’ iSaveRX: Safety issues, missing inspections, terminated with low utilization
- MN RXConnect: Safety issues, terminated with low utilization
- Maine: No inspections, confirmed counterfeit, overturned in Federal court
- Vermont: Not implemented yet, better savings through Medicaid, Projected savings to insurance companies: $2.61 to $2.82 per member, per month.
Questions over the politics of importation included: What has the rhetoric around these bills been like? Are state legislatures considering safety when passing them? Does spending time or money on legislation like this defer other priorities? Is this more of a soundbite than a real proposal?
During the meeting, some examples were shared of where a patient dollar for a pharmaceutical goes. An
infographic shows the complexity of how money flows in the U.S. healthcare supply chain.
The following materials were shared with retreat attendees:
The ADAP Advocacy Association would like to publicly acknowledge and thank Shabbir for facilitating this important discussion.
HIV Criminalization:
According to some estimates, 14% (or 1 in 7) of all people living with HIV (PLHIV) in the United States, and 20% (1in 5) of Black Americans living with HIV, will pass through a jail or prison every year. Though there is variation state to state, the prevalence of HIV in state and federal prisons in the United States is nearly five times greater than that of the general population. The factors associated with disproportionate rates of incarceration -- such as drug use, non-conforming sexual and gender identity, mental illness, poverty, or being a person of color – can also augment a person’s risk of contracting HIV. Further, over 30 states have laws in place that criminalize alleged HIV exposure, non-disclosure, or transmission. Many states also apply harsher penalties to sex workers and people who inject drugs on the basis of HIV status. These laws perpetuate stigma of criminality, undercut public health, and disproportionately affect women, people of color, and other marginalized communities.
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| Photo Source: Queerty.com |
Efforts to reform HIV criminal laws are underway across the U.S. In the last year alone, reform was proposed or achieved in several states. The experiences in these states offer numerous lessons:
- Public health buy-in can be critical for success
- The need to draw connection between different advocacy communities, including those focused on HIV, LGBTQ+ rights, mass incarceration, sex workers’ rights and harm reduction.
- In state legislatures education is critical and support can come from unexpected places.
While HIV criminal laws must be reformed to address the overrepresentation of PLHIV in the criminal legal system, it is also essential to consider broader drivers of incarceration of PLHIV, including the war on drugs and discrimination against people of color and LGBTQ+ people in housing, employment, and education. Mass incarceration and HIV are linked epidemics, and the systemic injustices that drive mass incarceration also power the continued transmission and increasing prevalence of HIV in marginalized communities. Advocacy efforts, which seek to reform HIV criminal laws without attention to broader community-level factors impacting risk of incarceration for PLHIV are incomplete.
The following materials were shared with retreat attendees:
The ADAP Advocacy Association would like to publicly acknowledge and thank Robert for facilitating this important discussion.
Ryan White Program:
The Ryan White HIV/AIDS Program was discussed, as well as the potential intersection with the Administration's plan to End the Epidemic by 2030 (EtE) initiative. As a foundational point for this discussion, some important facts were shared on why is the
Ryan White Program needed if people with HIV have health insurance coverage, especially its role in leading the way in getting people with HIV virally suppressed by ensuring stable access to HIV primary care and medication, along with critical support services.
The discussion included a summary on the progression from 2010 National HIV/AIDS Strategy to 2015 Strategy to Trump Administration plans. Additionally, it reviewed what is the role of the Ryan White Program and HRSA/HAB leadership in this initiative, as well as what are the opportunities and challenges with this effort?
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| Photo Source: HIV.gov |
There was considerable debate on where the HIV community stands on the EtE initiative, which led to a broader conversation whether it is possible to define the "community" since there are often significant disconnects between national, state, and grassroots opinions.
With ongoing concerns over the current Administration, Ryan White reauthorization was weighed in the context of the current political environment. Yet there was recognition that the program would need to be updated at some point in time. That discussion led to a broader conversation on how is the program addressing emerging or other issues (Rapid Start of ART, HCV Elimination, Opioid/SUD response, STIs, other issues).
The following materials were shared with retreat attendees:
The ADAP Advocacy Association would like to publicly acknowledge and thank Jeffrey for facilitating this important discussion.
Additional 2019 Fireside Chats are planned in Richmond, Virginia, and New York, New York.
