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AIDS DRUG ASSISTANCE PROGRAM

This blog focuses on the federal commitment to fully fund the AIDS Drug
Assistance Program (ADAP) for people living with HIV/AIDS.


THURSDAY, JUNE 23, 2022


HIV/AIDS FIRESIDE CHAT RETREAT IN WILMINGTON, NC TACKLES PRESSING ISSUES



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

The ADAP Advocacy Association hosted an HIV/AIDS "Fireside Chat" retreat in
Wilmington, North Carolina among key stakeholder groups to discuss pertinent
issues facing people living with HIV/AIDS. It was the first Fireside Chat in
over two and a half years, after they were suspended in response to the ongoing
Covid-19 pandemic. The Fireside Chat took place on Thursday, June 16th, and
Friday, June 17th. Utilization Management, Ending the HIV/AIDS Epidemic (in the
South), and Covid-19's Impact on Public Health were evaluated and discussed by
22 diverse leaders in the fight against the HIV/AIDS epidemic.


Photo Source: Getty Images

The Fireside Chat included moderated white-board style discussion sessions on
the following issues:


 * Utilization Management: What is its Impact on Patient Access to Care and
   Treatment — moderated by Murray Penner, U.S. Executive Director, Prevention
   Access Campaign (PAC)
 * Ending the Epidemic (EHE): What is its Impact in the South — moderated by Lee
   Storrow, National Policy Director, Community Education Group (CEG) & Board
   Chair, Southern AIDS Coalition (SAC)
 * Covid-19: What is its Impact on HIV, Viral Hepatitis, Sexually Transmitted
   Infections (STIs), and Substance Use Disorder — moderated by Jen Laws,
   President & CEO, Community Access National Network (CANN) & Board Member,
   ADAP Advocacy Association

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:



 * Guy Anthony, Founder, Black, Gifted & Whole
 * De' Shea Coney, HepConnect Coordinator, North Carolina AIDS Action Network
 * Tori Cooper, Director of Community Engagement, Human Rights Campaign
 * Dawn Patillo Exum, Director of Public Policy, Merck
 * Jasmine Ford, HIV Clinical Coordinator, Virginia Department of Health
 * Dusty Garner, Board Member, Community Access National Network
 * Aquarius D. Gilmer, Associate Director, Corporate Policy & Alliances, Gilead
   Sciences
 * Marcus J. Hopkins, Founder & Executive Director, Appalachian Learning
   Initiative
 * Tim Horn, Director, Health Care Access, National Alliance of State &
   Territorial AIDS Directors (NASTAD)
 * Venton Jones, Chief Executive Officer, Southern Black Policy & Advocacy
   Network
 * Jen Laws, President & CEO, Community Access National Network
 * Brandon M. Macsata, CEO, ADAP Advocacy Association
 * Judith Montenegro, Program Director, Latino Commission on AIDS
 * Murray Penner, Executive Director, North America, Prevention Access Campaign
 * Kalvin Pugh, Sr. Manager, Community Engagement at International Association
   of Providers of AIDS Care
 * Alan Richardson, Executive Vice President of Strategic Patient Solutions,
   Patient Advocate Foundation
 * Carl Schmid, Executive Director at HIV + Hepatitis Policy Institute
 * Robert Skinner, Advocate — Florida
 * Cindy Snyder, Director, Government Relations, ViiV Healthcare
 * Lee Storrow, National Policy Director, Community Education Group
 * LaWanda Wilkersaon, Advocate — North Carolina
 * Joey Wynn, Chairman, Florida HIV/AIDS Advocacy Network (FHAAN)

The Covid-19 pandemic is still ongoing, and accordingly to The New York Times
(as of June 14th), “The average number of new cases in the United States fell to
98,867 yesterday, a 2 percent decrease from the day before. Since January 2020,
at least 1 in 4 people who live in the United States have been infected, and at
least 1 in 330 people have died” (NYT, 2022).

With that in mind, the ADAP Advocacy Association implemented strong Covid-19
safety protocols for the Fireside Chat, which included proof of
vaccination/booster, robust self-administered testing (prior to travel, upon
arrival, and after returning home), complimentary rapid self-test kits and hand
sanitizer for each of the attendees, as well as guidelines for masks on
commercial travel to the event, and optional masks during the sessions (which
some attendees exercised without feeling shunned). 

At the meeting's outset, a signature fishing vest with its AIDS red ribbon owned
by the late Bill Arnold, longtime President & CEO of the Community Access
National Network (CANN), was gently placed on one of the chairs in the room. It
was meant to symbolize that Bill would always have a seat at the table in an
honorary way to pay tribute to the decades of advocacy work done on behalf of
people living with HIV/AIDS dating back to the 1980s. There wasn't a dry eye in
the room!

Bill Arnold, August 13, 1938 - September 29, 2021

The ADAP Advocacy Association is pleased to share the following brief recap of
the Fireside Chat.

Utilization Management (UM):


Murray Penner provided a basic overview on the managed care practice, often
referred to as utilization management (or utilization review), used by payers of
health services, such as commercial insurance plans, public health programs
(i.e., Medicaid, Medicare, Ryan White), Veterans Affairs, and other programs.
Today, patients need to be savvy, because the United States has one of the most
expensive and fragmented healthcare delivery systems in the world. UM can indeed
serve a purpose, but the reality is that purpose if often clouded by the
pitfalls.

According to Penner: "UM is a process that payers and healthcare plans utilize
to evaluate the medical necessity, appropriateness, and efficiency of the use of
health care services (medicines, procedures, etc.). There are valid reasons for
UM (particularly medical necessity), but UM is also often used to help contain
costs and to deny coverage of high cost meds and procedures in favor of lower
cost alternatives. With HIV medications, in particular, it often restricts
access to medications that providers and patients have determined as necessary
for appropriate care and treatment. UM practices in theory are appropriate for
safety and continuity of care, but far too often they have become discriminatory
and present challenges to accessing medications and remaining adherent to them."

Penner's discussion on UM started with a broad overview of the practice,
including examples, clinical efficacy, and provider feedback. It also included
the impacts of UM on patient access, Ending the Epidemic efforts, and viral
suppression, as well as the statutory and regulatory protections and
limitations. 

Prior authorization is probably the most commonly-known technique exercised by
payers, but many others exist. An important part of the conversation centered
around a recent survey on prior authorization released by the American Medical
Association (AMA), 2021 AMA prior authorization (PA) physician survey.  

The survey found, sadly, that one in four patients often abandon their
recommended course of treatment, and a staggering "82% report that PA can at
least sometimes lead to treatment abandonment." The survey focused on patient
impact, but it also featured relevant information on physician impact and
employer impact. The survey results can be found online
at https://www.ama-assn.org/system/files/prior-authorization-survey.pdf.

Photo Source: American Medical Association

Patients needing to complete eligibly "recertification" under the State AIDS
Drug Assistance Program (ADAP) was also a hot topic of conversation. Most States
require the bureaucratic red tape be rolled-out every six months, which is
widely accepted as unnecessary. Fortunately, some flexibility was recently
authorized by the Health Resources & Services Administration (HRSA) on the ADAP
recertification process. The Virginia Department of Health, for example, is
extending their program recertification to every 24 months!!!

Other UM-related issues discussed included drug formularies, convoluted Rx
refill cycles, safety protections afforded to patients (i.e., drug
contraindications), and the "prescriber prevails" provisions under New York
Medicaid.

The following materials (partial list) were shared with retreat attendees:



 * American Medical Association - 2021 AMA prior authorization (PA) physician
   survey. American Medical Association
 * American Medical Association - Prior Authorization and Utilization
 * Centers for Medicare and Medicaid - CCIIO Regulations and Guidance
 * Harvard Health Publishing - Do generic drugs compromise on quality? 
 * Health Affairs - Quantifying The Economic Burden Of Drug Utilization
   Management On Payers, Manufacturers, Physicians, And Patients
 * Journal of Managed Care & Specialty Pharmacy - The Effect of Formulary
   Restrictions on Patient and Payer Outcomes: A Systematic Literature Review
 * AIDS and Behavior - The Demand for Antiretroviral Drugs in the Illicit
   Marketplace: Implications for HIV Disease Management Among Vulnerable
   Populations 
 * NBC News - Transgender people report years of battles for health insurance
   coverage 



The ADAP Advocacy Association would like to publicly acknowledge and thank
Murray for facilitating this important discussion.

Ending the HIV Epidemic (in the South):

The Ending the HIV Epidemic (EHE) in the United States initiative has been front
and center among HIV advocacy circles since it was announced during a previous
president's State of the Union. According to the U.S. Centers for Disease
Control & Prevention (CDC), "The EHE initiative is scaling up four science-based
strategies that can end the epidemic: Diagnose, Treat, Prevent, and Respond. For
maximum impact, CDC is continuing to invest in communities most affected by HIV
— to help local HIV programs recover, rebuild, and begin to expand EHE
strategies in the wake of COVID-19."

Lee Storrow summarized it more clearly as, "Refocusing limited resources to
target the hot spots." Despite the EHE initiative being characterized by some
advocates as off to a middling start, it does still represent the first new
influx of significant federal dollars in quite some time. Of particular
importance to this discussion was EHE's footprint in the South (and Appalachia),
which is disproportionately impacted by HIV/AIDS.

Of course, one of the biggest - and still ongoing - topics of intense
conversation center around why some apparent hot spots are included under the
EHE initiative, while others were excluded. For example, West Virginia. Neither
West Virginia nor any of its 55 counties were included as Phase 1 jurisdictions
of the EHE initiative. Considering the state has two enduring, intertwined
epidemics, West Virginia's exclusion highlighted some of the initiative's
shortcomings.

According to Storrow: "The participants of the fireside chat had a wealth of big
ideas about how we could make a big impact when it comes to HIV rates in the
South and Appalachia. Ending the Epidemic isn’t just a reference to the plan and
funding source, it’s a mindset to catalyze new energy and bring new resources to
bare to combat HIV. When I was working in HIV advocacy in North Carolina, we
took advantage of the moment in time the announcement of the federal EHE created
to get new state funding from the NC General Assembly. We’ve got to leave it all
on the line and leave no stone unturned to make sure the HIV advocacy community
has the resources and tools to get this work done."

Storrow's discussion on EHE (in the South) included a history of the initiative,
as well as where we are today fighting the epidemic in the South and in
Appalachia. Discussions centered around targets (and whether they'll be met),
disruptions caused by Covid-19, state-level EHE plans, and future federal EHE
expansion to include other jurisdictions.

Photo Source: ADAP Advocacy Association

Storrow also used the session to raise awareness about the Opioid Settlement
Plans that are currently unfolding nationwide. It led to a lively conversation
about how those settlement dollars could be leveraged to boost public health
programs that specifically impact HIV, viral hepatitis, sexually-transmitted
infections, and substance use disorder programs.

Other EHE-related issues discussed included social determinants of health, and
ongoing challenges to achieve better health equity.

The following materials were shared with retreat attendees:
 * The Hill - Pandemic disrupted HIV prevention efforts, CDC report says
 * NPR - Lessons From HIV On Ending The COVID Pandemic
 * Office of the Honorable Shelley Moore Capito - CAPITO URGES HHS SECRETARY TO
   INCLUDE WEST VIRGINIA IN INITIATIVE TACKLING HIV EPIDEMIC; WV initially
   excluded from federal program aimed at helping communities most affected by
   HIV
 * North Carolina Health News - Mecklenburg among top focus locations in Trump
   HIV plan
 * North Carolina Health News - Zero new HIV cases: the goal for Mecklenburg
   County
 * North Carolina Department of Health and Human Services - NCDHHS Urges Testing
   During National HIV Testing Day, Releases End the HIV Epidemic Plan
 * North Carolina Department of Health and Human Services - NC ENDING THE
   EPIDEMIC: A Plan to End HIV Together Community-by-Community Hand-in-Hand
 * Opioid Settlement Tracker - STATES' OPIOID SETTLEMENT ALLOCATION PLANS

The ADAP Advocacy Association would like to publicly acknowledge and thank Lee
for facilitating this important discussion.


Editor's Note: In May 2014, the ADAP Advocacy Association published an issue
brief, "THE SOUTHERN EPIDEMIC: Are the South's cultural, political and societal
barriers making it difficult for public health programs, such as the AIDS Drug
Assistance Programs, to function effectively in this region?" Ironically, many
of the topics raised during the EHE (in the South) session were raised nearly
ten years ago in our issue brief. The issue brief can be downloaded here.

Covid-19's Impact on Public Health:

In early 2021, Jen Laws penned a blog evaluating the mess being caused by the
Covid-19 pandemic. At that time, Laws argued, "Covid-19 has also clearly
highlighted the impact of social determinants of health and health disparities
of which HIV and HCV [Hepatitis C] advocates have long been aware." He was
right, and unfortunately not much as changed 18 months later.

According to Laws: "Public health has taken on new, both exciting and
unfortunate, shapes as a result of our collective responses to Covid-19. The
expanded use of telemedicine has helped modernize our access to care while also
leaving those in more rural areas and impoverished communities of the country at
distinct disadvantage due to lack of infrastructure, threatening to widen
already existing health disparities. Defining a still shifting landscape as
Covid-19 related flexibilities and legal changes, presents numerous challenges
to public health as an industry and public health professionals will be
digesting these changes and challenges for years, if not decades, to come. This
is as true, if not more true, for pre-Covid-19 public health programs focused on
infectious disease, including STIs, HIV, and viral hepatitis, as these
infrastructures and personnel continue to face uncertain futures in politically
hostile environments."

Laws' discussion on Covid-19 impact included background context on the state of
public health programs pre-Covid-19, as well as related changes to public health
and public health programs. It included discussion on the current and future
state of the public health programs important to the HIV community. Some of
the key questions asked included: What changes do we want to keep? What changes
do we need to do away with? How do we evaluate the paradigm shift in publics'
mood toward public health (i.e., anti-science, anti-vaccination)?

Photo Source: CDC

The stated goal of the session was "to define the impacts of COVID-19 on public
health infrastructure and programs." It celebrated flexibility and innovation
offered by various temporary governmental regulation and the “forced
modernization” of health care in many situations – namely, telehealth. Of dire
concern, however, are these flexibilities are threatened to end as the public
health emergency winds down, including the continuous coverage requirement for
Medicaid programs under the public health emergency declaration. Some attendees
also stressed that there are downsides to relying on telehealth, especially for
rural communities lacking the necessary infrastructure to make health care
accessible.

CDC's own HIV surveillance data proves earlier Covid-19 concerns, which was
regularly noted.

The following materials (partial list) were shared with retreat attendees: 
 * Community Access National Network - Community Roundtable Emphasizes Impacts
   of COVID-19 (2021) 
 * Community Access National Network - Community Roundtable Defines the Shape of
   Public Health Advocacy Amid COVID-19 (2022) 
 * Centers for Disease Control and Prevention - Impact of COVID-19 on STDs.
   Sexually Transmitted Disease Surveillance 2020
 * National Association of County and City Health Officials - NACCHO Requests
   Protection of Public Health department Officials and Staff from Harassment,
   Intimidation, and Threats of Violence
 * NBC News - Because of Covid, 2020 was a ‘lost year’ in the fight against HIV,
   report suggests
 * Kaiser Health News - Strides Against HIV/AIDS Falter, especially in the South
   as Nation Battles COVID
 * Kaiser Family Foundation - Delivering HIV Care and Prevention in the COVID
   Era: A National Survey of Ryan White Providers

The ADAP Advocacy Association would like to publicly acknowledge and thank Jen
for facilitating this important discussion.

Additional Fireside Chats are planned in September 2022 (Chicago, Illinois).


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.

Posted by ADAP Advocacy Association at 6:06 AM

Labels: ADAP Advocacy Association, AIDS Drug Assistance Program, COVID-19,
Ending the HIV Epidemic, Fireside Chat, HIV, HIV/AIDS, prior authorization,
Utilization Management


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