IRA Spelling Trouble for Community Pharmacies, and Patient Access Could be Next

By: Ranier Simons, ADAP Blog Guest Contributor

The Inflation Reduction Act of 2022 (IRA) contains multifaceted goals to improve healthcare access and lower healthcare costs, including prescription drug costs (CMS, 2025). The Medicare Drug Price Negotiation program is one such initiative, according to the Centers for Medicare and Medicaid Services (CMS). This initiative authorizes Medicare to directly negotiate the price of prescription drugs with manufacturers for outpatient drugs under Medicare Part D and later for physician-administered drugs under Part B. The initial ten drugs identified for “negotiation” have already been selected, and their new pricing will go into effect in 2026 under what has been termed the Maximum Fair Price (MFP). Whether the IRA’s lofty goals – such as lowering patient drug costs and lowering insurance premiums – are successful remains questionable. However, community pharmacies are already being adversely impacted by the new, untested pricing scheme, which could spill over and cause harm to patients. The National Community Pharmacists Association (NCPA) recently released an analysis of the MFP’s potential unintended effects on pharmacies' financial stability and cash flow (NCPA, 2025). The picture is bleak. 

Photo Source: NCPA

Implementing the MFP is a departure from the current status quo of pharmacy reimbursement. Presently, pharmacies purchase drugs, pay their acquisition cost, and are subsequently reimbursed by PBMs after filing their claim. The drugs on the MFP list require a different payment mechanism. The MFP program requires payment from PBMs and refunds from manufacturers. In general, PBMs will reimburse pharmacies an amount equal to the MFP, and then manufacturers will be required to reimburse pharmacies for the difference between the acquisition price and the MFP (NCPA, 2025). The mechanisms for implementation and the amounts paid are the sources of cash flow concern for pharmacies.

The MFP payments will be made utilizing a system in development called the Medicare Transition Facilitator (MTF) (NCPA, 2025). It will have two parts, the MTF Data Module (MTF DM) and the MTF Payment Module (MTF PM). All parties must enroll in the MTF DM to ensure compliance with open data exchange for expedient application of negotiated prices. The MTF PM is optional for manufacturers who can make refund payments via it or by another means of their choosing. The time delay in reimbursement payments for both the PBM payment and the manufacturer refund is an issue.

NCPA’s analysis of historical payment data indicates that PBMs currently reimburse pharmacies around 14 days after a claim is filed (NCPA, 2025). They constructed a payment model of cash flow, indicating the new MTF PM approach would add a delay to completed reimbursement. NCPA anticipates that, on average, manufacturers would refund pharmacies around one week after PBMs submitted reimbursement. This would mean pharmacies would have less cash for operating expenses while waiting for full reimbursement. The PBM payment would theoretically be equal to the MFP, which is a significant discount on the acquisition cost, on average 60 percent (NCPA, 2025). Thus, a pharmacy would have to function with a cash flow deficit until the manufacturer’s refund was paid, potentially making them whole regarding what they paid to acquire the drug. Moreover, this leads to potential issues of reimbursement amounts.

Photo Source: Lagniappe Pharmacy

Under the status quo, pharmacies already deal with issues of under-reimbursement. There is potential for additional harm under an MFP scenario. Presently the NCPA found that pharmacies are operating with small margins of profit. Under the MFP framework, pharmacies could bring even less revenue (NCPA, 2025). Currently, pharmacies operate profitably with payments higher than their acquisition costs. Under the MFP PM system, profit due to pricing differential is lowered or eliminated. Additionally, the MFP is the maximum possible PBM reimbursement. There is a possibility that PBM reimbursement may be lower than the MFP (NCPA, 2025). Thus, pharmacies could end up at a loss when net reimbursement is the difference between the acquisition cost and the sum of the PBM reimbursement and manufacturer refund.

Patients’ access to medications could be harmed if pharmacies close due to their inability to operate under financial losses. Additionally, NCPA posits that pharmacies associated with 340B Covered Entities could be adversely affected. Their model, which assumes an operational average of 15 fills of MFP medications per week, would equal a typical annual loss of revenue in the range of $240,060.60 to $ 433,633.20 (NCPA, 2025). Losses on this level would mean termination or significant scaling back of services for vulnerable populations that 340 B Covered Entities serve. NCPA also emphasizes in their reporting that the MFP does not mandate a dispensing fee, nor does any IRA document indicate any dispensing fee guidance (NCPA, 2025).

The NCPA based its analysis and modeling on available data of historical Medicare prescription drug data. However, the inferences made could be drastically different once the MFP PM approach is put into effect. Delays in payments from PBMs and manufacturers could be longer than expected, leading to even greater financial instability due to a poorer influx of cash flow. Terms between wholesalers and pharmacies could change further, negatively affecting pharmacy reimbursement levels. There is the theoretical possibility of improvements in revenues for pharmacies where the MFP manufacture refund would be more than they usually receive for reimbursement. However, this is not what NCPAs analysis indicates as a widespread possibility (NCPA, 2025). The end result is patients unable to access the medications they need.

Photo Source: ConsumerMedSafety.org

The bottom line is that while well-intentioned, the MFP could have a host of unexpected negative potential outcomes. Many details of the MTF have not been completely fleshed out. Moreover, NCPA analysis indicates that the amount of potential financial loss increases as the volume of a pharmacy’s MFP-associated drug prescription fills increases (NCPA, 2025). Being engaged with the continued development of the MTF-DM and MTF-PM is crucial to ensure that policymakers do not end up codifying effectuating harm.

[1] CMS. (2025, January 20). Inflation Reduction Act and Medicare. Retrieved from https://www.cms.gov/inflation-reduction-act-and-medicare#:~:text=People%20with%20Medicare%20will%20benefit,Changes%20to%20Medicare%20Part%20B

[2] National Community Pharmacists Association (NCPA). (2025, January). Analysis on Pharmacy Cash Flows. Retrieved from https://ncpa.org/sites/default/files/2025-01/January2025-ThreeAxisAdvisors-Unpacking-the-Financial-Impacts-of-Medicare-Drug-Price-Negotiation.pdf

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. 

Bipartisan lawmakers urge Administration to rethink proposed changes to six protected classes policy

By: Tom Wilbur, Director of Public Affairs, PhRMA

Reprinted with Permission from the Pharmaceutical Research and Manufacturers of America

At the end of 2018, the Centers for Medicare & Medicaid Services (CMS) introduced a dangerous proposed rule that would weaken the Medicare Part D six protected classes policy. The six protected classes policy covers patients whose conditions – like HIV, cancer, and epilepsy among others - are treated with medicines covered under six specific drug classes. The proposed rule would weaken the six protected classes policy by allowing increased use of step therapy or utilization management, including for patients already stable on a medicine. This practice is meant to reduce drug costs by requiring patients to begin treatment with a therapy preferred by the insurer before they can access the one their doctor thinks will work best for them.

Since the proposed rule was released, patient groups and advocates — particularly those representing patients with the diseases and conditions treated by medicines in these classes— have come out strongly against the proposed rule changes. Now, Members of Congress from both sides of the aisle are expressing their concerns as well because of the potential negative impacts on patients’ health.

Last week, a bipartisan group of 73 Members of Congress, led by Congresswoman Barbara Lee and Congressman Will Hurd, sent a letter to Health and Human Services Secretary Alex Azar asking the Secretary to withdraw a proposal that would modify the Part D program protections afforded to the six classes of drugs. The Members write, “We are concerned that prior authorization and step therapy requirements could have devastating public health outcomes for those receiving treatment of HIV and the additional five protected classes. Considering the public health implications of the proposed changes to Part D protected classes related to prior authorization and step therapies – we respectfully request that you withdraw the relevant provisions of the rule.”

The bipartisan Congressional Mental Health Caucus, led by Congresswoman Grace Napolitano and Congressman John Katko, also pushed back against the rule in a letter – signed by 39 Members of Congress – to Secretary Azar. The letter states, in part, that the proposed changes are “particularly worrisome” for Medicare beneficiaries living with mental illness.

In the Senate, Senators Marco Rubio and Krysten Sinema led a bipartisan letter alongside more than a dozen Senators outlining reasons the proposed rule should be reconsidered. In the letter, they note how the rule would not just adversely affect HIV patients but also cancer patients needing “highly personalized therapies;” schizophrenia and depression patients who “often struggle to find a medicine that works for them and could risk relapse if forced to switch to alternatives;” epilepsy patients who “often find that only one treatment works for them and any disruptions in treatment could increase the likelihood of seizures;” and organ transplant patients who have “complex medical needs and should not be required to jump through hoops in order to prevent transplant rejection.”

Bipartisan lawmakers, on both sides of aisle and on both sides of the Capitol, clearly oppose this proposed rule because for over 10 years, one of the cornerstones of the Medicare Part D program has been to ensure the sickest and most vulnerable patients have access to the clinically critical medicines they rely on. Letting plans restrict access for some of the sickest and most vulnerable Part D beneficiaries would reduce adherence to those medicines, jeopardize their health, increasing their need for medical care and result in poorer health outcomes and potentially higher costs for seniors and Medicare.

Visit PrescriptionForMedicare.org to learn more.

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.

Can The HIV Community Beat President Trump?

Guest Blog By: Josh Robbins, imstilljosh.com

Reprinted with Permission from Josh Robbins, imstilljosh.com

How to continue to survive Trump if you are living with HIV

Photo Source: imstilljosh.com

The Trump Administration is weirdly disinterested in the HIV epidemic in the US. And that’s the biggest understatement that I have ever written. 

President Trump fired the remaining members of the Presidential HIV Council one year ago. The Office of National AIDS Policy has been empty since the beginning of his administration. (I called the day Trump was inaugurated to see if the office was still open and I left a voicemail. I have not received a return call. Shocker!?!?)

Money intended for funding the US fight against the epidemic at home and internationally has been chipped away and it appears that HHS is just trying to be quiet about it all—almost fly under the radar. Who can blame them? They are probably doing the best thing at the moment, honestly.

I inquired to HHS about PACHA (Presidential Advisory Council on HIV/AIDS) and the status of Kaye Hayes.

Here were my questions: 

• Is Kaye Hayes still the executive director of PACHA?
• How many members are currently on PACHA? Who are they?
• What is the current status of PACHA?
• When was the last time that PACHA provided guidance or input to the administration? Can I receive a copy of that?
• When is the next planned meeting?
• And if no members are currently on the council, is there any guidance being given to the current administration? If so, by whom?

Here’s the official response by the HHS spokesperson: 

Photo Soure: imstilljosh.com

I interpret this as no news. And silence. Not good!

This Is Not Going Well

When you think about the administration’s ‘less than friendly’ welcoming of immigrants and those seeking asylum in the U.S., or those visiting from other countries and remembering the nightmare Trump has put many through by changing travel rules and instituting immediate travel bans—it’s just so damn overwhelming. Honestly, I can’t even remember all the bad stuff.

Here’s the real tea about it: It’s only been two years! Can we all make it two more years?

YES! Yes, we can. And we will.

When Trump became President, I wrote about the best ways for us all to survive. Other popular websites in the HIV space called it the Trump-apocalypse.

Read: 10 Ways To Survive A Trump Administration

So, how we continue to survive this administration?

1. We are not the victims. We are must never view our advocacy as such. We are strong, healthy, and marginalized. But we will survive!
2. We must engage the administration at every opportunity—not just complain. We were caught off our game when he was elected. We better prepare better for the 2020 election. 
3. We must have a message of hope, based in science and demonstrate what we are advocating for—to live well. #UequalsU
4. We still need to support national ASOs and organizations like ADAP Advocacy Association. 
5. We need some of our leadership to change. We must identify new leadership to be our community voices. And we must stop allowing a small caucus to say they speak for us when they have missed the boat largely with U=U. 
6. We must lean on each other when we need it. Sean McKenna calls it a buddy program. Get a buddy!!! 
7. We must recognize disparities and work together to end them… and we must make room at the table for others who have been silenced or ignored. But we must not allow this to drive wedges within our community. We need to work together as one unit! 
8. We need to ask for personal help when we need it. We are advocates and many are long term survivors. But we must allow our pride to disappear when we need help.

It has been a hell of two years, but it’s been a hell of an epidemic and we are going to make it!

I love you all!

Let’s do this!!!

[Check out the original blog post by Josh Robbins online at imstilljosh.com]



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.

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.

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!


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.

Would You Like Some Carolina Sweet Tea with Your Felony Charge?

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

When the time came to move out of New York City, I set my sites on moving down South. I have always heard that the South was very welcoming and full of charm, so I was naturally very exited to replant my roots in North Carolina. The southern charm of being in North Carolina was short lived because up until recently the state had an outdated HIV criminalization laws that required individuals living with HIV to disclose their HIV status to any sexual partners.

Failure to do so, among other requirements under the law, would result in serious consequences like prosecution and jail time. According to the Sero Project, in North Carolina the maximum penalty for violation is two years in prison if convicted.[1] There are numerous and various cases of this including a man living with HIV being convicted and then sentenced to 35 years in prison for using a deadly weapon on a police officer… his saliva.[2]

As a man living with HIV it sets off all my alarm bells for various reasons. The first is that much of driving force behind the adoption of the HIV criminalization laws was the fear that surfaced during the early years of the epidemic. Thirty years ago, it was certainly a death sentence but modern medicine has changed that diagnosis with the great leaps in antiretroviral therapy. According to the Centers for Disease Control & Prevention, anyone living with HIV who takes anti-retroviral medication as prescribed, and who have an undetectable viral load, presents no risk of transmitting the virus to an HIV-negative person.[3]

Unfortunately, many things have not changed along side modern medicine, such as fear, misconceptions and uninformed beliefs and thought processes regarding HIV. Additionally what concerns me with HIV criminalization laws is that it continues to keep the stigma that is attached to being HIV-positive in place. There are numerous forces that put in enormous effort to diminish or eradicate stigma but these laws set back all of the progress that has been made over the years. What these laws ultimately do is create a level of fear that is dangerous for those who are HIV-negative and HIV-positive. For those who are HIV-negative the fear of prosecution from an HIV diagnosis keeps them from being tested when the real fear is not knowing or infecting others unknowingly. For those who are HIV-positive the stigma and fear of prosecution pulls them away from seeking treatment or continuing their care. The end result is detrimental to those in and out of the HIV community and completely counterproductive.

Luckily, the recent change to the HIV-criminalization law in North Carolina has changed the steering for us as a collective society to head in a different direction.[4] Under the new law those living with HIV no longer have to disclose their HIV status to sexual partners if they are virally suppressed for six months or longer. Along side these changes, the revised law also reflects a change in language, which replaces “a person infected with AIDS” with “a person living with HIV”. While these changes are small they have huge impacts in the fight against HIV and the stigma that is attached to it. This revision is aligned with the changes that have occurred since the beginning of the epidemic and reflect more accurately the realities of living with HIV and the consciousness that is needed in order to ensure that we, as a collective society, are informed appropriately and accurately. If we continue this upward pace then things will definitely start getting a little sweeter down here.

Photo Source: Western North Carolina AIDS Project

__________

[1]  The Sero Project. North Carolina. Data from the GNP+ Global Criminalization Scan. Retrieved from: http://www.seroproject.com/states/north-carolina/
[2] New York Times. (2008, May 16). Prison for Man With H.I.V Who Spit on a Police Officer. Retrieved from: https://www.nytimes.com/2008/05/16/us/16spit.html
[3] HIV Plus Magazine. (2017, October 22). CDC Officially Admits People With HIV Who Are Undetectable Can’t Transmit HIV. Retrieved from https://www.hivplusmag.com/undetectable/2017/9/27/breaking-cdc-officially-recognizes-undetectableuntransmittable-hiv-prevention
[4] Western North Carolina AIDS Project. (2018, Feb 20). HIV Criminalization Laws Change in North Carolina. Retrieved from: https://wncap.org/2018/02/20/hiv-criminalization-laws-change-north-carolina/

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.

Controversial History with HIV Disqualifies Robert Redfield from CDC Service

Guest Blog By: Marcus J. Hopkins, Blogger

Robert Redfield, a 66-year-old virologist and physician, has been appointed to be the head of the U.S. Centers for Disease Control and Prevention (CDC) by U.S. Health and Human Services (HHS) Secretary Alex Azar (Sun, 2018b).  Redfield has replaced the acting head of the CDC, Principal Deputy Director Anne Schuchat, after the Trump Administration’s first pick, Brenda Fitzgerald, was forced to resign because she failed to divest from her “complex financial interests” “…in a definitive time period” (Sun, 2018).

Fitzgerald’s financial interests were so “complex” that she was essentially permanently recused from participating in the agencies activities and was unable to testify before Congress on public health issues.  Appointed by Trump’s first HHS Secretary, the disgraced Tom Price, Fitzgerald repeatedly dismissed concerns about her financial interests, and yet, had to cancel each appearance before Congress because of said interests.

Under Azar, Redfield is yet another controversial pick to head up the nation’s primary health organization.  Redfield has a long and storied history of controversial positions related to HIV and public health.

Photo Source: Gay Today

Beginning with his tenure within the Defense Department, Redfield helped create a disastrous and non-confidential policy of testing all troops for HIV beginning in October 1985 (Garrett, 2018).  Troops who tested Positive for HIV often found out after their entire chain of command, and anyone found to be HIV+ was immediately barred from service.  In addition, Active Duty personnel were also tested, and if found Positive, were often subjected to mistreatment, including isolating HIV+ personnel in isolated barracks colloquially referred to as “the leper colony,” where they were treated like prisoners until they fully developed AIDS or were dishonorably discharged.  By 1989, 5 million troops were tested, and roughly 6,000 testing Positive (Garrett). 

In the 1990s, Redfield was yet again embroiled in HIV chicanery when internal memos were obtained by Public Citizen, a left-leaning non-profit organization that represents patients, citizens, and consumer rights through advocacy and policy research.  These previously unrelease memoranda demonstrated clear evidence that Redfield led a: 

…systematic pattern of data manipulation, inappropriate statistical analyses, and misleading data presentation by Army researchers in an apparent attempt to promote the usefulness of the GP160 AIDS vaccine…which [was] intended to prevent the progression of disease in persons with HIV infection (Public Citizen, 1994).

In Phases I and II studies, researchers at the Walter Reed Army Institute of Research, led by then-Chief of the Department of Retroviral Research, Robert Redfield, and were published in many scientific fora (plural for “forum”), including the New England Journal of Medicine, AIDS Research and Human Retroviruses, and at the International AIDS Conference in 1992.  The fabricated results were also twice falsely presented before hearings of the House Subcommittee on Health and Environment.

This repeated demonstration of a lack of ethics, moral fortitude, and integrity make him clearly unfit to head that nation’s leading health organization.  Dr. Peter Lurie, President of the Center for Science in the Public Interest (CSPI), goes further in his full-throated opposition to Redfield, stating that, as the head of the CDC, we would get “…a sloppy scientist with a long history of scientific misconduct and an extreme religious agenda” (Lurie, 2018).  We at ADAP Advocacy Association could not agree more with this assessment.

The Trump Administration has repeatedly displayed a unprecedented lack of integrity on several front, but perhaps its worst offenses exist with its appointments – Betsy DeVos, Scott Pruitt, Mick Mulvaney, Tom Price, Mike Pompeo, Rex Tillerson and Ryan Zinke.  Each of these appointments stands on their own in terms of their unpreparedness, lack of candor, and incompetence within their positions, rife with conflicts of interest, unacceptable levels of spending on personal travel and completely unnecessary “security upgrades,” and serving not the interests of the American public, but either the interests of corporations who have long derided the wings of government they now lead, or their own.  Robert Redfield is just the latest example of this failure to understand either the complexities of the positions to which they are appointed, or the roles of this organizations in American governance.

Enough is enough.  Redfield must, as his predecessor before him, be flushed out of the CDC before we become the laughing stock of the world.

References:

• Garrett, L. (2018, March 23). Meet Trump’s New, Homophobic Public Health Quack. Washington, DC: Foreign Policy. Retrieved from: http://foreignpolicy.com/2018/03/23/meet-trumps-new-homophobic-public-health-quack/
• Lurie, P. (2018, March 21). CSPI Urges Administration Not to Appoint Dr. Robert Redfield, with History of Scientific Misconduct, as CDC Director. Washington, DC: Center for Science in the Public Interest: News. Retrived from: https://cspinet.org/news/cspi-urges-administration-not-appoint-dr-robert-redfield-history-scientific-misconduct-cdc
• Public Citizen. (1994, June 07). Washington, DC: Public Citizen. Retrieved from: https://kaiserhealthnews.files.wordpress.com/2018/03/940607plswtowaxman.pdf
• Sun, L.H. (2018a, January 31). CDC director resigns because of conflicts over financial interests. Washington, DC: The Washington Post: News: To Your Health. Retrieved from: https://www.washingtonpost.com/news/to-your-health/wp/2018/01/31/cdc-director-resigns-because-of-conflicts-over-financial-interests/?utm_term=.24ab7b89a316 
• Sun, L.H. (2018b, March 21). Longtime AIDS researcher Robert Redfield picked to lead CDC. Washington, DC: The Washington Post: News: To Your Health. Retrieved from: https://www.washingtonpost.com/news/to-your-health/wp/2018/03/21/longtime-aids-researcher-robert-redfield-picked-to-lead-cdc/?utm_term=.3a5d8f592e61

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.

Advocacy Scholarship Applications Now Being Accepted for 11th Annual ADAP Conference

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

This week via Twitter (@adapadvocacy) the ADAP Advocacy Association announced it is accepting advocacy scholarship applications to attend its 11th Annual AIDS Drug Assistance Program ("ADAP") Conference. The 2018 conference is being held on September 20th & 21st under the theme, "Mapping a New Course to Protect the Public Health Safety Net."

The Annual ADAP Conference is the premier, patient-centric advocacy event on the AIDS Drug Assistance Program held in Washington, DC. It assembles advocates, community organizers, health care professionals, government agencies, patients, pharmaceutical companies, pharmacies, and other stakeholders for two days of advocacy, dialogue, education, and networking.

In 2017, over 50 scholarships were funded for advocates to attend the advocacy and educational events —with recipients representing 20 states (including AL, CA, FL, GA, IL, IN, LA, MA, MD, MI, MO, NC, NY, OH, PA, SC, TX, VA, WA, and the District of Columbia). This year, we hope to fund even more.

Advocates interested in submitting an application for a scholarship to attend the conference can do so online at https://www.surveymonkey.com/r/NDXMXQ9. Four different scholarships are offered, and they include:

• SCHOLARSHIP OPTION A

It includes waived conference registration fee and awards dinner registration, only.

• SCHOLARSHIP OPTION B

It includes waived conference registration fee and awards dinner registration; and provides two nights hotel accommodation.

• SCHOLARSHIP OPTION C

It includes waived conference registration fee and awards dinner registration; and provides roundtrip transportation (up to $325.00).

• SCHOLARSHIP OPTION D (Editor's Note: Applicants for this option must be invited to apply using an invitation code)

It includes waived conference registration fee and awards dinner registration; provides two nights hotel accommodations; and provides roundtrip transportation (up to $325.00).

Applicants seeking a full scholarship (option D) to attend the 11th Annual ADAP Conference must be invited to apply using an invitational code. This represents a new policy for the full scholarship option.

The scholarship application process has grown increasingly competitive since it was launched six years ago. As such, we look to offer scholarships to advocates who are looking to do more than simply learn; rather we're seeking to assist advocates who will take what they learn and apply it back home in their communities. Scholarship recipients are required to sign a scholarship contract since more scholarship applications are received than can be approved each year, and therefore it is expected that scholarship recipients attend the conference sessions.

Please help to support these advocates by donating online today.

Additional information about the 11th Annual ADAP Conference is available online. Potential scholarship applicants can also obtain additional information about the conference and scholarship process by sending an email to info@adapadvocacyassociation.org.

Taking a Deeper Dive into the Ryan White HIV/AIDS Program

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

The Health Resources & Services Administration ("HRSA") HIV/AIDS Bureau at the U.S. Department of Health & Human Services ("HHS") has made available state profiles to highlight important client-level data (2015). It includes an interactive web platform, which allows users to compare states, compare states to national data, or compare data by year. The estimated number of clients served by Ryan White HIV/AIDS program providers in the United States in 2015 was 533,0361.[1]

Aside from client characteristics, other key data focuses on grant recipients, client outcomes, oral health programs, and services received. Of particular interest to stakeholders concerned about the AIDS Drug Assistance Program ("ADAP"), users can download how ADAP funds were administered in the United States in 2015. In 2015, an estimated 259,531 clients were served by ADAP in the United States. According to HRSA, new clients were served totaled 34,265.[2]

The site shares key ADAP-related client demographics on age, gender, race, and income. For example, Florida served 56,677 clients in 2015. Males represented 75.9% of the clients served, and females represented 23.4% of the clients served. Clients who identified as transgender were 0.7%. Vermont served 595 clients, with one in four clients being male.

HRSA sharing the Ryan White program-related data is not only important because it promotes programmatic transparency (and these programs have long demonstrated to be highly effective), but also because it fosters better state-level advocacy. All too often, data on public health programs can often be quite lacking, or delayed (or both). The data included on the site will come in handy as we map a new course to protect the public health safety net!

Explore national-and state-level Ryan White HIV/AIDS Program data.

__________

[1] HRSA. Ryan White HIV/AIDS Program Services Report (RSR) 2015. *RSR data were deduplicated at the national level. Clients receiving services in multiple states were not included in state-specific totals; these clients make up less than 2% of the total RWHAP population.
[2] HRSA. Ryan White HIV/AIDS Program Services Report (RSR) 2015. 

Closing the Book on 2017

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

This year, 2017, marked the ADAP Advocacy Association's 10th Anniversary, and it certainly wasn't without new accomplishments by our efforts, as well as plenty of political fireworks in Washington. It is clear that the uncertainty present at the start of the year remains as this year comes to a close. In fact, World AIDS Day — often viewed as an opportunity to reflect and grow — was widely tempered by the uncertainly being perpetuated by the man occupying the White House. Closing the book on 2017 is bitter sweet!

Our World AIDS Day Message to President Donald J. Trump sums up the "bitter" part of that statement. It really needs no further commentary, at this time.

But the year wasn't without the "sweet" moments, and that much should be celebrated! We were proud to partner with the Professional Association of Social Workers in HIV/AIDS to educate social workers and other key stakeholders about some key issues impacting our community. They included experts presenting on various issues, such as patient assistance programs, housing, transgender health, and substance abuse. The webinar archives are available online.

Our 10th Annual Conference lived up to its reputation as being the premier event for people living with HIV/AIDS concerned about the AIDS Drug Assistance Programs. With one of our most diverse line-up of conference speakers, it certainly challenged conference attendees to think outside of the box in the Age of Trump! This year we had advocates from 23 states in attendance, while also funding 50 scholarships!

In 2017, improving access to care among transgender men & women living with HIV/AIDS under Ryan White/ADAPs was one of our focus areas. To that end, we made a available a series of important resources — including an infographic, policy white paper, and Twitter chat. We were proud to partner with RAD Remedy to accomplish these important tasks. We applauded RAD Remedy earlier this year when they issued their National Standards of Care for TGIQ Health.

Of course, there was plenty of other advocacy activities throughout the year. They can be viewed on our website at adapadvocacyassociation.org. The New Year will be upon us rather quickly, and we look forward to continuing our work with you.

Linkages to Care - Plugging the Treatment Gap: Navigating Patient Assistance Programs

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

In the United States, everyone hates how insurance companies "stick" it to consumers. There is pretty much universal agreement that the cost of prescription drugs are too high. There is also near consensus that the marketplace plans under the Affordable Care Act ("ACA") have caused a lot of headaches for patients with chronic conditions — including HIV/AIDS — especially with respect to the high tier drug plans. It is no wonder that so many cracks exist within the current healthcare framework. Fortunately, there also exist patient assistance programs ("PAPs") designed to plug the treatment gaps for these patients. PAPs serve as key linkages to care...and treatment!

According to PatientAssistance.com, "Commonly referred to as PAPs, Patient Assistance Programs are services offered by pharmaceutical companies for those who cannot afford their medication. Patient assistance programs are available to low-income individuals or families who are under-insured or uninsured and are provided to those who meet the eligibility guidelines. Assistance may range from reduced cost of drugs to free medicine. Each drug that a company offers will have its own unique program and may even have a different eligibility requirement than the other drugs they offer. As there is no unified standard of designation for these programs, you may also see them referred to as medication assistance programs, indigent drug programs, and charitable drug programs."[1]

Photo Source: MedicineCoupons.net

PAPs are vitally important to patients living with chronic conditions. They not only improve access to care and treatment, but they also save consumers money and reduce lost productivity. They also benefit the drug manufacturers because PAPs keep patients (would-be consumers) in treatment. The data shared by the Partnership for Prescription Assistance ("PPA") — which connects qualifying patients with the assistance program that’s right for them — is mind-blowing.

Celebrating its 12-year anniversary, PPA recently reported that its website is visited by over 75,000 consumers per month and makes available information on more than 475 patient assistance programs. It also offers a database of nearly 10,000 free or low-cost health care clinics across the country. Over 10 million consumers have been helped since the program's inception.[2]

Aside from the resources made available to consumers directly from the drug manufacturers, there also exists other patient-centric organizations designed to assist patients with prescriptions, discount drug cards, and other patient resources. Just to name a few, they include the Patient Access Network Foundation ("PAN"), Patient Advocate Foundation ("PAF"), and NeedyMeds. Each of these organizations serve as vital linkages to care for social workers, case managers, and allied health professionals assisting patients. These organizations also each partner with the ADAP Advocacy Association.

In an effort to raise awareness about patient assistance program and how they serve people living with HIV/AIDS and/or viral hepatitis, we will host an educational training webinar on May 31, 2017. The webinar, "Plugging the Treatment Gap: Navigating Patient Assistance Program," will showcase important information about these patient-centric PAPs. It will provide webinar attendees with a greater understanding about patient assistance programs, tools for how to navigate patient assistance programs to best assist patient needs, strategies for better seamless delivery of health-related care and treatment, and useful resources and tools to plug the treatment gap.

Registration is open to all stakeholders. Registration is complimentary for PASWHA members, and it is also complimentary for patients living with HIV/AIDS. Use this scholarship link if you are a patient living with HIV/AIDS applying for a webinar scholarship.

Additional information about the webinar is available online at https://www.123signup.com/event?id=nhjqn.


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[1] PatientAssistance.com (2014); The Catalyst; What are Patient Assistance Programs?; PatientAssistance.com, Inc. Retrieved from https://www.patientassistance.com/faq.html.
[2] Mooney, Hannah (2017, April 5); 12 years of the Partnership of Prescription Assistance; Pharmaceutical Research and Manufacturers of America®. Retrieved from http://catalyst.phrma.org/12-years-of-the-partnership-of-prescription-assistance.

Is it Time for a Reset to the Ryan White CARE Act?

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

It has been almost 27 years since the mother of a young boy dying of AIDS received a phone call from the late Senator Edward Kennedy (D-MA), asking if it would be okay to attach the boy's name on federal legislation.1 That young boy's name was Ryan White, and it has become synonymous with the Ryan White Comprehensive AIDS Resources Emergency Act (Ryan White CARE Act). Since 1990, it has saved countless lives of people living with HIV/AIDS in the United States. The law is due to be re-authorized by Congress, and some are asking if the time is right for a "re-set" so that the supports and services authorized under the law better reflect the state of the epidemic.

HIV surveillance data reveals some interesting trends about the epidemiology of the disease over time. Diagnosis of HIV infection demonstrates that some things have remained constant, such as men who sex with men (MSM) and intravenous drug use (IDU) represent two of the high-risk transmissions groups. But today, HIV infection disproportionately impacts communities of color, as well as people living in rural areas of the country. Heterosexual woman and adolescents are also greatly at risk for HIV infection.

The following charts published by the Centers for Disease Control & Prevention (CDC) help to explain the trends in HIV diagnoses in the United States between 2010 - 2014:2

Photo Source: CDC

Photo Source: CDC

Photo Source: CDC

According to the CDC, "The South now experiences the greatest burden of HIV infection, illness, and deaths of any U.S. region, and lags far behind in providing quality HIV prevention and care to its citizens." It begs the question, shouldn't the federal government adopt a "money follows the person" paradigm to reflect the changing epidemiology?

Some of the important questions surrounding Ryan White reauthorization include the following:

• should funding stream formulas count cumulative AIDS cases or only living HIV-positive people?
• should wrap-around services be expanded for clients who have Medicare Part D, Medicaid or Veterans Affairs healthcare?
• should coverage include inpatient hospital care?
• should coverage include Hepatitis C (HCV) drug therapies?
• should commercial health insurance premium assistance programs be liberalized?

"At a time when we have the most effective and simple HIV treatments and a very volatile healthcare insurance landscape, WE NEED the Ryan White safety net program for continuity - less we forget without care and treatment HIV is a deadly and transmissible disease," summarized David Poole, Director of Legislative Affairs at AIDS Healthcare Foundation."

Next week this issue will be discussed at the ADAP Advocacy Association's AIDS Drug Assistance Program Regional Summit in Raleigh, North Carolina. "Ryan White & Service Delivery Systems in the Age of Budget Austerity" is one of the topics on the agenda with leading policy stakeholders concerned about the future of the program, and potential impact on patients living with HIV/AIDS and other underserved populations.

For complete information about the Ryan White CARES Act please visit http://hab.hrsa.gov/abouthab/legislation.html.


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[1] Groppe, Maureen (2014, July 30); Future of Ryan White program not clear; JConline. Retrieved from http://www.jconline.com/story/news/2014/07/30/future-ryan-white-program-clear/13376961/.
[2] National Center for HIV/AIDS, Viral Hepatitis, STD and TB Prevention (2017, March 24); HIV Surveillance—Epidemiology of HIV Infection (through 2015); Centers for Disease Control & Prevention, U.S. Department of Health & Human Services. Retrieved from https://www.cdc.gov/hiv/pdf/library/slidesets/cdc-hiv-surveillance-genepi.pdf.
[3] Centers for Disease Control & Prevention (2016); HIV in the Southern United States; TheBody.com. Retrieved from: http://www.thebody.com/content/76879/hiv-in-the-southern-united-states.html.