Trump & HHS Sanction Healthcare Discrimination

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

The ADAP Advocacy Association earlier this week joined with the Community Access National Network (CANN) in issuing a strong rebuttal to the expected approval of new federal rules sanctioning discrimination by healthcare workers. The “Moral Exemptions & Accommodations for Coverage of Certain Preventive Services Under the Affordable Care Act” — which was initially published in the Federal Register on October 13, 2017, and subsequently on January 26, 2018 — harkens the United States back to the dark, early days of the AIDS epidemic. It is absolutely deplorable!

Photo Source: BSNtoMSN.org

The impending federal rules are not surprising since the current occupant at 1600 Pennsylvania Avenue has systematically embraced the hateful rhetoric and policy positions of the extreme religious right in this country! In the Oval Office, our beloved Bill of Rights has been replaced with advise from Tony Perkins. In the U.S. Department of Health & Human Services, our sacred Hippocratic Oath has been shoved aside to make room for James Dobson. In the HHS Office for Civil Rights, primum non nocere (first, do no harm) has been flushed down the toilet to make way for the bullsh#t being spewed by Jerry L. Falwell, Jr.

Clearly, most of the anti-gay and anti-AIDS posturing is coming from our esteemed Vice President (pun intended). The buck stops with the (crazy) man at the top, and he is who must be held accountable for sanctioning this discrimination.

In fairness, such laws are nothing new. So-called "Church Amendment" laws date back to the 1970s. Most recently it was the Affordable Care Act (Pub. L. No. 111-148 as amended by Pub. L. No. 111-152) itself that included such conscience protections regarding abortions and assisted suicides. The newly released proposed federal rules go further, though.[1]

The target of the so-called "Conscience Rule" are women seeking abortions, but also an entire group of people who identify as gay, lesbian, bisexual, or transgender (LGBT). Its potential reach has broader implications. And as such the reaction from the medical community, scientific organizations, patient advocacy groups, mainstream religious institutions, and so many others has been overwhelmingly negative.

It was summarized best by our board member and former Registered Nurse, Wanda Brendle-Moss:

"As a practicing nurse in Winston-Salem, North Carolina during the early 1980s, I witnessed firsthand the devastating impact of a new illness that was wreaking havoc on the gay men. What made the circumstances robbing so many lives even harsher was medical professionals refusing to treat these patients because they feared the illness. That illness would soon have a name, and it remains with us today: AIDS. Though we’ve made a lot of progress in fighting this deadly epidemic — which as taken nearly 40 million souls from us globally — that fear remains today. Unfortunately, new guidance issued by our government only makes matters worse."

According to Brendle-Moss, trying to comprehend the long range impact of the changes is incomprehensible. In her estimation the "First, Do No Harm" oath taken by all medical students could now be replaced with the prejudicial refusal to provide care and treatment. As a woman living with HIV/AIDS, she fears for the future of her longtime profession if it is allowed to be held hostage to religious fanaticism. She rhetorically asks, "What will be the standard of care for persons diagnosed with AIDS, or women seeking family planning services?"

It isn't only the LGBT community that is concerned. Women are also rightfully worried, especially those who are battered women or rape victims. We've already seen how people living with HIV/AIDS were treated at the outset of the AIDS epidemic. All of these groups...and others...could be faced with legalized refusal to treat under these new federal regulations.

Read the Joint Statement on Discriminatory Proposed Healthcare "Conscience Rule".

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[1] Mohr, Aaron, and Allison Smith (2018, February 9); How HHS’s New Division in the Office for Civil Rights Will Enforce Rights of Conscience and Religious Freedom; JD SUPRA. Retrieved from https://www.jdsupra.com/legalnews/how-hhs-s-new-division-in-the-office-38382/.

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.

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[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. 

Introduce a Little Anarchy...and Everything Becomes Chaos

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

In the 2008 blockbuster film, The Dark Knight, there is an infamous line by the Joker (played by the late Heath Ledger): "Introduce a little anarchy; upset the established order, and everything becomes chaos." That line by the Clown Prince of Crime pretty much sums up the last twelve months for those of us working to end the HIV/AIDS epidemic. In fact, chaotic would be an understatement.

Photo Source: The Dark Knight

The Administration's proposed budget last year was submitted to Congress late (and it will be so again this year), and it was laced with requested funding cuts to vital safety net programs. The Presidential Advisory Committee on HIV/AIDS ("PACHA") is in complete disarray between protest resignations coupled with termination of the remaining members. The Office of National AIDS Policy ("ONAP") — viewed as an important component of the White House Domestic Policy Council since 1993 — is seemingly gone. There has been no ONAP Director to coordinate the nation's response to HIV/AIDS at home, and abroad. Proposed regulations allowing healthcare professionals to deny care if it violates their "conscious" and seek to divert limited resources to organizations that refuse comprehensive strategies under the banner of religious objection. And that doesn't even scratch the surface with the countless attacks levied against the patient protections offered to people living with HIV/AIDS under the Affordable Care Act ("ACA").

On February 1st, we fired a shot across the bow at the Administration. We called on the newly minted Secretary of the U.S. Department of Health & Human Services ("HHS") to fill the vacant director position at ONAP. Now to be fair, HHS Secretary Alex Azar has no statutory authority to fill this position but he has the ear of the President who does — and that has to be worth something. Our press release is available online.

Photo Source: (AP Photo/Andrew Harnik)

It is, after all, a core responsibility of the HHS Secretary to utilize the position of influence with the President in seeking to address the public health needs of the nation. We have added our voice to the calls from numerous other advocates, legislators, and organizations that realize the vital need for this position to be filled immediately.

Since 1993 when ONAP was created the longest time period the director position remained vacant was approximately two months. It has now been twelve months since someone has led our government's response to an epidemic that has taken 35 million souls globally. It is bad public policy. It demonstrates poor leadership. And it is simply wrong!