The Southern ADAP Advocacy Summit Talks about Pharmacy Mandates and the Reauthorization of Ryan White CARE

The second session of The Southern Regional AIDS Drug Assistance Program (ADAP) Summit in Atlanta on April 10 examined a pharmacy issue with some of the Affordable Care Act (ACA) marketplace plans purchased through ADAP (ADAP-ACA plans). Some of these plans have required customers to purchase pharmaceuticals through mail order pharmacies, usually linked to drug store chains.

Large numbers of ADAP clients have begun to transition to ACA plans. As of May 2014, about 13,000 national ADAP clients had transitioned into ADAP-ACA plans. About 2,000 Floridians on ADAP, about 10 percent of all Floridians on ADAP, had transitioned to ADAP-ACA plans as of March 31, 2015.

These mail order pharmacies operate more like a supply chain than a clinical care system. For people with undetectable viral loads, a supply chain approach might be the best and cost-effective option. Mail delivery may provide the anonymity that walking into the local pharmacy lacks.

Joey Wynn affirmed the value of mail order under certain conditions, “Mail order is a very good thing for a lot of people most of the time.” While some customers may find mail order pharmacies a good match, other customers may not.

A supply chain approach may not be best for those customers with adherence issues or multiple complex, chronic conditions. Requirements to use mail order pharmacies could save money, but may not lead to a suppressed viral load. Cost “savings” without cost-effectiveness squanders scarce resources.

Requiring ADAP-ACA customers to use mail order pharmacies bars the use of HIV specialty pharmacies. They evolved to serve those customers needing more than an efficient supply chain. A Registered Nurse working in a local HIV specialty pharmacy, John Marangio, described what an HIV specialty pharmacy does and what would be lost under a mail order pharmacy.

Marangio emphasized the nursing and clinical perspectives of HIV specialty pharmacies. They employ large numbers of clinically trained staff with expertise in HIV or Hep C. Their customers could have six or seven co-occurring disease conditions. For healthy people, the pharmacist functions as human vending machine, but for people with complex health issues, the pharmacist has to be more than that.

HIV specialty pharmacies have both case managers and couriers. While the courier delivers the drugs, the courier can observe the customer’s home surroundings and physical appearance. The case manager coordinates between the pharmacy, the physician, and the customer. This system allows the pharmacy to contact the customer when adherence problems appear such as the prescription running out, or the customer leaving his residence.

This type of intense interaction may cost more, but the desired outcome is a suppressed viral load, not dispensed pills. Marangio described the role of HIV specialty pharmacies as “trying to keep costs down through adherence.”

The ACA has known positive effects. More people now have access to health care. Other effects, both positive and negative, remain unknown. Two known negative effects have already emerged:

1. ACA marketplace discrimination (An insurer designing a plan to discourage people with an expensive health condition from purchasing it)

2. Mandated use of mail order pharmacies. People need to become aware of both the positive and negative effects of the ACA on RWC to inform its reauthorization,

Ryan White Care Will Change Over Next Few Years

The third session of The Southern Regional AIDS Drug Assistance Program (ADAP) Summit on April 10, 2015 discussed the reauthorization of the Ryan White Act. The Ryan White Care (RWC) Act expired last year but Congress has continued to fund it with continuing resolutions. Historically, it has had broad bipartisan support. Bill Arnold of Community Access National Network (CANN) and Kathie Hiers of AIDS Alabama spoke about the reauthorization of the Ryan White Care Act as it affects the U.S. South. The U.S. South has the highest rates of HIV infection and the most hostile political/cultural environment of any region in the US.

Kathie Hiers reported, “Every Ryan White Care Act re-authorization has drama.” Reauthorization involves aligning local interests with a functional national coalition that distributes resources to those local interests. Hiers stated, “If the community cannot come to agreement, then RWC cannot be re-authorized.” She emphasized the importance of its reauthorization to our community and as a model for good health care.

Hiers stated that Ryan White Care would not go away, but it would change. She predicted a probable reduction in Ryan White Care funding in the next few years. The HIV communities need to figure out which parts to maintain. Hiers emphasized the importance of a discussion now about the future of Ryan White Care. She felt this discussion should occur within the communities and with office holders.

She reported that moving people from RWC to ADAP-ACA plans has changed things. Many people are afraid of “putting stuff out about Ryan White Care” without knowing the effects of the ACA. No one, however, knows the full impact of ACA on RWC. Bill Arnold reported, “We don’t have the data we need on the effects of the ACA and we may not have it for a long time. We don’t know when to push this.” Regardless of the uncertainty, the communities need to start this conversation now, he continued.

Many other people at the summit also felt that the time had come to start developing criteria for the next authorization of Ryan White. Hiers and Arnold, and many in the audience argued in favor to talking to political representatives now.

Hiers reported that as some RWC clients are now ADAP-ACA clients, RWC has saved some money. A major question concerns what happens with that money. Some politicians would like to take that money back.

Unfortunately, a potential division within the HIV coalition exists. The refusal of certain states to expand Medicaid has resulted in differences among the states. Those states that expanded Medicaid have shifted a larger portion of their costs to Medicaid, resulting in a “surplus” for these states. Congress could take back this "surplus," the states with this “surplus” could shift their funds to other RWC programs in their own state, or this “surplus” could be shifted to those states that refused to expand Medicaid.

This division parallels the “blue”-state “red”-state divide. Generally, “blue” states expanded Medicaid. Generally, “red” states refused to expand Medicaid. Most of the states in the U.S. South are “red” states.

Hiers reported that she has heard of some resistance from the states that expanded Medicaid to sending their cost savings to the states that refused to expand Medicaid. Hiers described it as a desire to punish the non-expansion states for failing to expand Medicaid. She considered this as punishing vulnerable people for the actions of the political elite.

This discussion produced more questions than answers except for the need to start the discussion now. The major HIV question for this year may well be what does the HIV coalition want in this reauthorization of Ryan White Care Act.


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