ADAP Leadership Award Honorees Help Navigate "Unchartered Water"

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

Yesterday, honorees of the 2016-2017 ADAP Leadership Awards were announced by the ADAP Advocacy Association (aaa+^®). The awards recognize individual, community, government and corporate leaders who are working to improve access to care and treatment for people living with HIV/AIDS — including the AIDS Drug Assistance Program (ADAP). This year's honorees reflect the organization’s conference theme, "Unchartered Water: AIDS Drug Assistance Programs in the Age of Trump."

The timing yesterday of the awards announcement was only fitting, as three Republican Senators joined all 48 Senate Democrats to kill the so-called "skinny bill" designed to repeal the Affordable Care Act (aka, Obamacare). So far this year, ADAP stakeholders — and many others — have been consumed by the uncertainty over the future of the ACA and the protections afforded to people living with HIV/AIDS. Whereas the "Age of Trump" is still unfolding, ACA repeal threatened the care for thousands of people living with HIV/AIDS either through ADAP premium assistance, Medicaid expansion, or ACA marketplace subsidies. That uncertainty has abated, at least for the short term.

Within the HIV/AIDS advocacy community, we are fortunate to be surrounded by so many inspirational leaders. They, too, serve as a reminder about the daily challenges faced by people living with HIV/AIDS, and yet how it is possible to overcome them. That is why it is important to reflect on the accomplishments achieved by individual, community, government and corporate leaders working to improve access to care and treatment for HIV/AIDS.

The awards will be presented to this year's honorees during the 7th Annual ADAP Leadership Awards Dinner, which is being held in Washington, DC on Saturday, September 23rd. The following leaders will be honored:

• Lifetime Achievement (individual): Paul Arons, MD & Paulette Heath
• Champion of the Year (individual): Britten Pund, Director, Health Care Access, National Alliance of State & Territorial AIDS Directors (NASTAD)
• Emerging Leader of the Year (individual): Khadijah Abdullah, Founder, RAHMA and Muslim Nannies
• Corporate Partner of the Year: ViiV Healthcare
• Community Organization of the Year: The Resource Group, Inc., Houston, TX
• Lawmaker of the Year: The Honorable Marilyn Avila, General Assemblywoman (N.C.) & The Honorable Scott Wiener, State Senator (Calif.)
• Social Media Campaign of the Year: Pozitively Dee Discussions, by Davina Conner
• Grassroots Campaign of the Year: Network Empowerment Project (NEP) by SERO Project
• Media Story of the Year: “America’s Hidden H.I.V. Epidemic” by Linda Villarosa, published in the New York Times on 06/06/17

Lifetime Achievement Award

Only the third time this award is being presented, it is being bestowed on two individuals who dedicated much their professional careers fighting the disease. Both are now retired.

Dr. Paul Arons has been advocating for people living with HIV/AIDS for several decades, never wavering in his commitment to promoting access to affordable care and treatment. He served as the medical director for the Florida Department of Health AIDS Program, where that state ADAP resides.  Paul remains involved in national advocacy, working with numerous national organizations. He continues to provide consulting to the Florida ADAP, and other regional and national organizations interested in ensuring optimal access to care and treatment for people living with HIV and Viral Hepatitis. Even in his retirement, Paul routinely reaches out to key stakeholders in the community to keep stakeholders updated on potential threats to safety net programs, such as Ryan White, ADAP, and Medicaid.

Paulette Heath was been a leader in the pharmaceutical industry at forging relationships with patient groups. During her tenure at Janssen Therapeutics, she continually sought input from community stakeholders, including hosting meetings in Washington, DC. Paulette ensured that Janssen Therapeutics was an informed industry partner, whether it through funding projects and events, sharing information about ADAPs, or promoting cross collaboration with other stakeholders. There was rarely an ADAP-related event whereby Paulette was not present, thus further demonstrating her commitment to improving access to care and treatment.

Champion Award

The ADAP Champion is the organization's oldest award, pre-dating the Annual ADAP Leadership Awards — which started in 2010. This year's award represents an important milestone, because it is the 10th time it is awarded.

Britten Pund has for many years been instrumental in advocating for people living with HIV/AIDS, and providing data to support the efforts of countless community organizations. Unrelenting in her mission, Britten works daily to ensure patients have access to ADAP resources, and professionally manages communications between pharmaceutical companies, AIDS Service Organizations, state agencies, healthcare providers, and others always keeping people living with HIV/AIDS as the top priority. For many years, Britten has helped to produce the ADAP monitor report annually for NASTAD. This data has broad value and reach contributing to ADAP decisions at the federal level, and state general assemblies across the country. She has presented at the Annual ADAP Conference for each of the last six years, and is expected to participate again this year.

Emerging Leader Award

Khadijah Abdullah started RAHMA, which addresses HIV/AIDS primarily in the American Muslim community. At the same time, RAHMA does not turn anyone away regardless of religious beliefs. According to RAHMA's website, "Rahma is the Arabic word for mercy. It is important to have mercy and compassion when supporting those living with HIV and spearheading educational efforts." In a very short period of time, Khadijah has positioned herself as a leading voice for an important marginalized community and achieving some pretty significant milestones. She has raised awareness about the important role Faith plays in the holistic continuum of care for many people living with HIV/AIDS.

Corporate Partner Award

ViiV Healthcare has launched numerous targeted projects, including community-led responses in resource limited settings and hostile environments for MSM and transgender people; its ACCELERATE! Initiative — which amplifies the voices of black gay men living with or affected by HIV; and its initiative on Closing the Gap in the Latinx Community. Additionally, ViiV's Positive Action Southern Initiative supports all populations living with HIV/AIDS in the South, it prioritizes support for the most impacted populations — including LGBTQ communities, youth, elderly, rural populations, formerly incarcerated, sex workers, and injection drug users.

Community Organization Award

The mission of The Resource Group, Inc. is to maximize all possible medical, psychosocial and educational resources to help persons affected by or at risk of HIV/AIDS with a primary focus in Northeast, Deep East and Southeast Texas. In September 2016, the Texas Department of State Health Services awarded funding to The Resource Group. Inc. to help improve the ADAP applications process by implementing ADAP workers at Ryan White agencies throughout Texas. As the only non-profit Ryan White Part B grant administration agency in Texas, we developed a system to implement, train and monitor the ADAP workers in a 51 county region, which includes rural East Texas and Houston.

Lawmaker Award

Former Representative Marilyn Avila served in the North Carolina House of Representatives from 2007 - 2016 representing Wake County, and served as a chair of the Health and Human Services Appropriations Committee. As a chair, she paid special attention to the budget for the NC AIDS Drug Assistance Program, and was committed to maintaining full funding for the program to guarantee all eligible individuals could receive medication. In 2016, she championed an effort supported by NC AIDS Action Network to expand access to care for ADAP to secure premium assistance for patients. Rep. Avila has also supported efforts to move North Carolina toward legalizing syringe exchange programs. In 2015, she was a lead sponsor on a bill to pilot used needle deposit sites, which was approved and paved the way for full needle exchange approval in 2016.

State Senator Scott Wiener was a vocal critic of the California Department of Health’s debacle over the state AIDS Drug Assistance Program contract, which resulted in interrupted treatment for clients, as well as possible data breach of client information. He commented, “I understand that the ADAP system is currently offline for an indefinite amount of time due to potential security breaches. Not only am I extremely concerned that personal information of ADAP clients may have been compromised, but also that the entire ADAP system is down during the height of open enrollment. Frankly, I am astounded that these system issues have yet to be resolved and continue to arise six months into the transition.” Senator Wiener was relentless in asking the tough questions that eventually led to the California DOH reversing course when it was evident that people living with HIV/AIDS were falling through the cracks.

Social Media Campaign Award

Pozitively Dee Discussions is a podcast hosted by Davina "Dee" Conner. Positively Dee Discussions promoted the Red Bow Tie campaign, in support of Heterosexual Men's HIV Awareness day on August 16th. It is aimed at supporting straight men with HIV, their needs, and the necessity create circles where straight men can connect and feel comfortable sharing their status. Creating that support helps straight men break through stigma and seek care that will protect their sexual health and their partner's sexual health. The podcast also collaborated with Rev. William Francis of the William Francis Ministries and Campaign Zero in Atlanta to promote the Red Bow Tie campaign on Heterosexual Men's HIV Awareness Day.

Grassroots Campaign Award

The Network Empowerment Project (NEP) was created by the Sero Project to facilitate the creation and strengthening of networks of people living with HIV (PLHIV) networks, whether the networks are focused on advocacy, education, recreation, provision of services or for mutual social support. NEP's goal is to support all such networks and make sure that those living with HIV who are newly-diagnosed are provided the opportunity to connect with the network(s) that can be most helpful to them in navigating the stigma, isolation, fear, loneliness, complicated treatment decision making and healthcare access issues and more.

Media Story Award

Authored by Linda Villarosa, "America’s Hidden H.I.V. Epidemic" highlighted why America’s black gay and bisexual men have a higher H.I.V. rate than any country in the world. It was published in the New York Times on June 6, 2017. The article was widely hailed as long-overdue, sounding the alarm over the disproportionate impact HIV/AIDS is having on this marginalized community.

Information about the awards is listed online at www.adapadvocacyassociation.org/awards.html.

Tickets to attend the awards dinner can be purchased online.

California has an ADAP Problem

By: Marcus J. Hopkins, Blogger

A contentious switch in contractors approved by the California Department of Health’s Office of AIDS (CDPH/OA) in 2016 has had several negative consequences, including two lawsuits from the previous contractor, lost applications, dropped coverage, a broken application system, and wrongly denied coverage for California ADAP clients. In other words, it is a complete mess in California.

The AIDS Drug Assistance Program (ADAP), Part B of the Ryan White CARE Act (RWCA) is designed to be the “payer of last resort” for patients living with HIV/AIDS whose incomes fall near enough to the Federal Poverty Level (FPL) to make affording the cost of care prohibitive, if not entirely unaffordable. As such, ADAP clients come to rely upon the uninterrupted delivery of those services in order to effectively treat their HIV infection, address co-morbidities, and achieve and maintain the viral suppression that makes transmission of the virus highly unlikely. By those measures the state of California has abjectly failed the charges whose health the ADAP program was intended to address.

The process that resulted in California’s dereliction of duty began in October 2015, when the initial Request for Proposal Process (RFP) was sent out. The initial RFP followed state guidelines using a 1,000-point allocation system to award the bid to contractors. Consistent with government regulations, the actual monetary bid for the contract (“Cost Calculation”) was weighted at 75% (750 points) and “Technical Calculation” requirements were weighted at 25% (250 points), with a contract term of three years with two one-year extensions for a total of a five-year contract (Hews, 2016).

Using this state-mandated RFP, the then-existing contractor, Ramsell Corp (Oakland, CA) submitted a bid of $900,000 per year, with no increases over the five-year period, for a total of $4.5 million for the Enrollment Benefits Management (EMB) part of the program – the process where clients apply for coverage and maintain enrollment in the program. A competing bid was submitted by Michigan-based A.J. Boggs & Co., Inc.: $4,699,585 for the first year, $2,212,563 for the second, $2,208,767 for the third, $2,211,532 for the fourth, and $2,235,012 for the fifth and final year, totaling $13,567,459 – a bid roughly $9.067 million higher than Ramsell’s (Hews).

Under the terms of the RFP, point allocation to the lowest bidder – Ramsell – would have been 750 points, while Boggs would have received 296 points, using the state-mandated formula. That was the case, until CDPH/AO Procurement Officer, Jeffrey Mapes, changed the terms of the RFP on December 03, 2015, reversing the calculations so that the Technical Calculation became weighted 75% and the Cost Calculation, weighted by 25% (Hews). Mapes’ actions, along with simple math miscalculations, led the Boggs being awarded the new contract on March 04, 2016.  Ramsell, unaware of these changes and miscalculations, submitted a Freedom of Information Act (FOIA) request for all documents related to the Boggs bid – a request whose fulfilment was delayed and incomplete. 

Realizing the errors in the process, Ramsell submitted a protest on April 06, 2016, from which the following excerpt comes:

We are concerned that the amount of time that has been allotted for system beta testing and enrollment worker training is not adequate. The Office of AIDS has notified us that the new system is still being developed, beta testing has not yet begun, and enrollment worker training will not begin until just weeks before the July 1st transition.  Further, the system is transitioning from one to three contractors which will require additional coordination to effectively serve clients. In order to ensure a seamless transition, we believe additional time is necessary to adequately beta test the new system, train enrollment workers, and ensure time for feedback on what works properly and what needs improvement (Otiko, 2016).

In June 2016, Ramsell Corp filed two separate suits related to the EBM and the Pharmacy Benefits Management (PBM) contract awarded to Magellan Rx Management, LLC. The EBM suit alleges that:

…after Ramsell complained about major defects in the unfair procurement, CDPH cancelled the award to Boggs, and then gave them an illegal, sole-sourced contract only days later in violation of the requirements of the State Contracting Manual. The lawsuit also notes that the Boggs’ bid was about three times higher ($9 million more) than the Ramsell bid (Allen & Barajas, 2016).

The PBM suit alleges that:

…in procuring the new contracts, CDPH: (1) failed to follow its own rules as set forth in the Request for Proposals (RFP); and (2) conducted the procurement in a biased manner that was slanted in favor of the out-of-state companies (Allen & Barajas).

Despite these lawsuits being filed, CDPH/OA continued the transition to the three new vendors, which also included Pool Administrators Inc. (which covered the Health Insurance Premium Payments (OA-HIPP) and Medicare Part D premium payment programs), effective July 01, 2016 (Grimes, 2016). Since that transition occurred, ADAP clients, healthcare providers, clinics, pharmacies, and AIDS Service Organizations (ASOs) have experienced numerous problems accessing coverage.

Clients have been turned away at pharmacies, forced to postpone medical procedures, and some have been dropped from the program, altogether (Gorman, 2017). Additional complaints from patients and caseworkers allege that reimbursement claims have been repeatedly rejected (Allday, 2017) and patients have been dropped from the health insurance because ADAP failed to send premium payments to the correct address (Gorman). Dr. Karen Smith, director of California’s Public Health Department, stated in a letter to state Senator Scott Wiener (D-San Francisco) that: 

Shortly after [the department switched to new contractors in July 2016], …CDPH received a letter from constituents expressing concerns that there were issues for some clients receiving medications.  …As you note, the ADAP portal was unexpectedly unavailable for ADAP enrollment worker and client use as of November 29, 2016, due to information security vulnerabilities in the system. …To ensure uninterrupted client access to medications, we have extended client eligibility to their next reenrollment or recertification date occurring after June 30, 2017 (Hemmelgarn, 2017). 

California State Senator Senator Scott Wiener; Gloss Magazine

Dr. Smith noted that her agency identified two separate breaches of information, and that impacted clients were notified. Those breaches, however, led to the online portal, where patients could register, re-enroll, and re-certify, being taken offline indefinitely on November 29, 2016. As of January 23, 2017 – just seven days short of the January 30 extension deadline – that online portal has not been replaced. This failure on the part of Boggs forced patients and caseworkers to register for ADAP by fax – a process that took weeks, due to a shortage of both fax machines and customer service workers to handle the load (Allday).

In response to patients being unable to access pharmacy services due to complications with PBM contractor, Magellan, the staff at Magellan were authorized by the state 

…to provide real-time, 24 hours a day, seven days a week authorizations to pharmacies for a 30-day supply of medications for ADAP clients with active eligibility who experience access issues at the pharmacy (Hemmelgarn). 

While this step is a nice quarter-way measure to ensure that active patients – those who have not been erroneously dropped or unable to enroll or certify – can gain access to their lifesaving HIV medications, it in no way serves as a long-term solution to address the myriad disasters that this ill-advised contract switch has created. For those patients, providers, and caseworkers who have been unable to successfully register clients, process claims, pay premiums, or be successfully reimbursed, this disastrous transition is entirely unacceptable.

Further frustrating already harried caseworkers and providers is that this transition from one California-based, minority-owned contractor (Ramsell) to three out-of-state contractors, one of which is inexperienced in the arena, could and should have been entirely avoided, had the CDPH/OA complied with the state-mandated RFP process and properly calculated the points, even within the new calculation. That Ramsell Corp, a company that had successfully provided services to California’s ADAP program for nearly twenty years, was summarily dismissed and their bids rejected in what appears to be retaliation for filing a formal protest in response to the procurement process is foolish behavior on the part of the CDPH/OA.

CDPH/OA’s failure to follow even the most basic statutes indicates the need for a new Procurement Officer, as Jeffrey Mapes’ unexplained and potentially illegal (Hews) actions indicates that he is unfit for the position. California’s patients deserve better, and until there is a permanent fix in place, it is incumbent upon all California residents, advocates, caseworkers, and providers to keep the pressure on the CDPH/OA.

According to sources, the Health Resources & Services Administration (HRSA) at the U.S. Department of Health & Human Services is aware of the situation and monitoring it.


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.

References:

• Allday, E. (2017, January 23). HIV patients call drug program fractured after shift in operators. San Francisco, CA: San Francisco Chronicle. Retrieved from: http://www.sfchronicle.com/health/article/HIV-patients-call-drug-program-fractured-after-10874920.php
• Allen, S. & Barajas, H. (2016, June 16). Lawsuits Charge California Department of Public Health With Placing AIDS/HIV Patients at Risk. Oakland, CA: Ramsell Corp: PR Web. Retrieved from: http://www.prweb.com/releases/2016/06/prweb13491971.htm
• Gorman, A. (2017, January 23). Crucial California HIV program in disarray after contract switch. Sacramento, CA: The Sacramento Bee: California Healthline. Retrieved from: http://www.sacbee.com/news/local/health-and-medicine/article127340804.html
• Grimes, K. (2016, June 29). Fishy Circumstances as CA Department of Public Health Replaces 20-Year Vendor. CA: Flashreport. Retrieved from: http://www.flashreport.org/blog/2016/06/29/fishy-circumstances-as-ca-department-of-public-health-replaces-20-year-vendor/
• Hemmelgarn, S. (2017, January 18). AIDS drug assistance program hits a snag. Los Angeles, CA: The Pride, The Los Angeles LGBT Newspaper. Retrieved from: https://thepridela.com/2017/01/aids-drug-assistance-program-hits-snag/
• Hews, B. (2016, June 30). Questionable State Bid Process Leaves California HIV/AIDS Community In Jeopardy. Cerritos, CA: Hews Media Group. Retrieved from: http://www.loscerritosnews.net/2016/06/30/questionable-state-bid-process-leaves-california-hivaids-community-in-jeopardy/
• Otiko, M. (2016, June 28). State Agency Sued Over Questionable Bidding Process. Sacramento, CA: The Sacramento Observer: California Black Media. Retrieved from: http://sacobserver.com/2016/06/ramsell-corp-files-lawsuits-against-state-agency-over-questionable-bidding-process/