AIDS Drug Assistance Programs Must Navigate Costs and Needs of People With HIV

Josh Robbins at the ADAP Advocacy Association's 11th annual conference
Kenyon Farrow

The ADAP Advocacy Association hosted its annual conference in late September, and it covered many subject areas along this year's official theme, "Mapping a New Course to Protect the Public Health Safety Net." The AIDS Drug Assistance Program, which was first established by Congress to pay for Retrovir (zidovudine, AZT) in 1987, was then incorporated into the Ryan White Care Act, which passed in 1990.

The session focused on open drug formularies used by state ADAP programs and their effects on health outcomes. A "drug formulary" is an approved list of prescription drugs -- both brand name and generic -- used by jurisdictions to pinpoint medications having the greatest overall value. Legally, each ADAP formulary must include at least one of each of the seven classes of drugs for HIV antiretroviral therapy. An open formulary is generally more expansive with multiple options in each drug class, whereas a closed formulary may be much smaller and limited. Each state's ADAP formulary is different.

The Affordable Care Act (ACA) has changed much of the health care landscape, including what kinds of insurance people living with HIV can have. Before the ACA made it illegal to prevent someone from getting insurance due to their having a pre-existing condition, Ryan White coverage was the only option in many states -- unless you had an AIDS diagnosis, for which you might then qualify for Medicaid or Medicare. The ADAP formularies paid for prescription drugs, but these programs were underfunded to meet the need, and many states had waiting lists.

Virginia braced for the impending change in 2010 (before the ACA provision to mandate insurance coverage took effect in 2014) using several strategies, said Kimberly A. Scott, M.S.P.H., director of HIV Care Services with the Virginia Department of Health.

"We struggled to provide medications for everyone before ACA," she said. "ACA gave us an unprecedented opportunity to provide medication access to as many of our clients as we could enroll. However, even our advisory committee at the time was not actually thrilled or supportive of us using ADAP money to buy insurance for clients."

With additional funding granted by the state legislature, the Virginia Department of Health ended its waiting list and set up a state pharmaceutical assistance program to pay for medications. This early program included insurance for pre-existing conditions. Scott and her team researched the ADAP rolls, making note of persons without insurance. Then, they discovered that purchasing insurance premiums was more cost effective than purchasing each person's medication.

"We were able to put some folks on that insurance, so that gave us a little bit of experience dealing with insurance before ACA," said Scott. "We spent a lot of time contacting clients, educating clients. ... We have a really strong health literacy component to the program, and we partner with our [AIDS Education and Training Centers] and consumer advisory groups to actually try to focus on developing health literacy programs that can teach people. And part of that is health insurance literacy."

The Virginia Department of Health used about 15 years worth of medication-utilization data from their state ADAP program to help prepare them for ACA. The agency then worked with Virginia Bureau of Insurance on deciding which plans to choose for its statewide formulary. Engagement also took place within the Department of Health's network of 1,200-plus pharmacies.

"We've been able to gradually increase the number of clients that we have on ADAP served by insurance. And for last year for 2018 coverage, we had 78% of our clients enrolled in an insurance plan," said Scott.

Virginia's ADAP open formulary features antiretroviral therapy medications along with drugs to treat high cholesterol, opioid overdose, and mental health. The ADAP advisory committee comprises physicians, nurses, consumers, pharmacists, and Ryan White staff members. The group meets multiple times each year to discuss new drugs on the market, as well to negotiate for the best drug prices.

"We can effectively serve two clients on insurance for the cost of what it is to buy medications for one client for one year," Scott noted. "That actually opened the door to have the most open formulary for a lot of our people living with HIV in the state than we would ever had otherwise."

Virginia could possibly serve as a case study in developing innovative strategies to improve health care access in its use of an open formulary. Though cost and coverage are still central concerns, Virginia provides coverage for person living with HIV whose income is at or up to 500% of the federal poverty level.

"When we look at all of the revenue streams available, if we're leveraging them all, then we really should not be restricted or limited in terms in really trying to get to the goals of treatment as prevention," she explained. "If we really think we can end the epidemic by 2020, 2025, 2030, we're able now to be focusing on piloting test-and-treat models so that people are getting access to medications the same day that they receive a positive test result if they're ready to take the medication."

But outside Virginia in other parts of the South, challenges persist. For activist and blogger Josh Robbins, of I'm Still Josh, a major concern is the practice of forcing consumers to use a specific pharmacy.

"A pharmacist is vital in the patient journey," said Robbins. There have been times when I was on medications and I've had a reaction, and I have been able to call my previous pharmacist on their cell phone to get an answer to something I needed. ... [T]his year, I had to rely on Tennessee ADAP for my drugs, and the second half of the year, I was told I couldn't go to the pharmacist I have had for the past four years -- the person who I have their cell phone."

Robbins added that, when he received his new medications, no pharmacist discussed with him the potential reactions or side effects from the introduction of these drugs into his updated regimen.

At the ADAP Advocacy Association conference session, decision-making motivations by the formulary management committees or state health departments emerged. For instance, who decides which medications are included or excluded? In addition, how responsive are ADAP formularies to the rapidly expanding treatment options?

"There has to be a discussion either with our clinicians or with our pharmacy staff to talk about if the drug is more effective than an existing drug or a generic drug, and how we then approach whether we are going to add a drug or the opposite," Scott said. "We look to make sure that no prescribers are prescribing sub-optimal regimens or medications that are no longer desirable in a regimen or [that] others [are] considered more effective."

Robbins said, "Having patients [at the table] is absolutely necessary because I think a lot of the time providers forget some of the things that patients need." He added: "[The] patient voice has to be there. If it's not there, it's not really going to matter to me."