Health care experts were counting on the Affordable Care Act to pave the way toward better treatment for Californians with HIV/AIDS. But so far, advocates and health officials say the new path is anything but smooth.
Although the ACA opened up insurance coverage previously unavailable to people with HIV/AIDS, finding the perfect balance of services and subsidies hasn’t been easy — or necessarily more affordable than the previous system — advocates say.
Before the ACA, many people with HIV/AIDS were ineligible for private insurance because of pre-existing conditions and they only qualified for Medi-Cal if they had a diagnosis of AIDS, previously considered a disability. Many such patients long relied on government programs and subsidies like the Ryan White Care Act and its AIDS Drug Assistance Program.
Changes in Drug Coverage
Advocates and state official say the biggest shock under the ACA for people with HIV/AIDS is the change in the cost of medications.
According to Project Inform, a San Francisco-based HIV/AIDS advocacy group that published an insurance-purchasing guide, many California insurers have either moved drugs to top tier pricing or stopped covering drugs altogether. For many patients, that meant HIV/AIDS drugs were unaffordable, advocates say.
“The new drugs are ridiculously expensive,” said Anne Donnelly, policy director for Project Inform. “So many of them are being classified as specialty drugs it’s going to change the way we have to build our reform systems around them.”
Advocates and health care providers say that charging more for some drugs amounts to discriminatory pricing. By categorizing HIV/AIDS medicines as specialty or top-tier drugs, patients’ portion of the costs can skyrocket, advocates say. Even when patients are only responsible for 15% to 20% of total price, their monthly bills can easily reach thousands of dollars.
Covered California plans are divided into four tiers — bronze, gold, silver and platinum — which increase in price, respectively. Advocates have urged individuals with HIV/AIDS to select platinum plans, which generally offer the most-generous drug coverage. But a lack of transparency meant that it was almost impossible to know what exactly a plan covered, according to advocates and health care providers.
“We wouldn’t even know if a drug was covered until we prescribed and the patient wasn’t able to get it,” said Sophy Wong, medical director at HIV Access and East Bay AIDS Education and Training Center in Alameda. “Other times, they wouldn’t realize that the price of the drug had risen to the point where they couldn’t afford it.”
Shifting to New Systems
Since 1990, the federal Ryan White HIV/AIDS Program has provided an array of services from primary care to specialized procedures and drugs. The AIDS Drug Assistance Program is a major feature of the program, providing no- or low-cost HIV/AIDS medications to low-income individuals. Under the ACA, more than 50% of Californians who had received services through Ryan White are now eligible for Medi-Cal. So far, the transition from Ryan White to Medi-Cal has not been as smooth as state health officials and HIV advocates hoped it would be.
“When you talk about transition and you talk about the HIV positive population, this is a population you can’t screw around with,” said Aaron Fox, health policy manager at the California LGBT Health and Human Services Network. “Combatting the disease means keeping them on care and keeping them on medication. Any disruption can lead to serious consequences.”
Wong sees gaps in care for her patients on a frequent basis.
“Very few patients have successfully gone on to Covered California because of drug prices,” said Wong. “HIV is a chronic, complex disease, and in order to get the best care, you need the best coverage. Not everyone can afford that.”
Delays in State Agency Payments
The Department of Public Health’s Office of AIDS is responsible for paying 100% of Covered California premiums for eligible patients with HIV/AIDS through its Health Insurance Premium Payment program. However, the office has experienced delays in processing payments.
The program is available to patients whose annual incomes are $50,000 or lower, making it an option for some Californians who are also eligible for subsidized coverage through Covered California.
DPH, in a written response to questions, said there isn’t one clear reason why payments to certain providers or individuals were halted or slowed, but some contributing reasons could be incomplete or missing applications, consent forms or billing statements.
“When we hear of such a problem, especially when the problem is widespread throughout a particular health plan, we take immediate action by communicating with management at the health plan to identify the problem and resolve it in an expeditious manner,” a DPH spokesperson wrote in an email.
DPH said in some cases insurers’ records do not reflect payment made by the Office of Aids on behalf of the client.
Some HIV/AIDS patients, unable to pay their premiums on time, have been dropped from their plans, advocates said. Still ineligible for Medi-Cal, they are scrambling to get their medication filled under ADAP, which also is subject to delays.
“This is a reality,” Wong said. “People are falling into dangerous places.”
ADAP has long been the payer of last resort, covering all medications for HIV/AIDS as long as the recipient is eligible. For those with higher incomes — even only slightly higher — medications can become prohibitively expensive, advocates said. Because of higher pricing for certain HIV/AIDS drugs under private plans, advocates say patients are hesitant to transition out of ADAP and might even quit their jobs in order to keep their incomes low enough.
“People are faced with very real ethical decisions when it comes to keeping their jobs or keeping their health care,” said Wong. “To think of someone who makes too much money for ADAP, but not enough to really afford these new premiums, and living in places like the Bay Area, you’re really faced with a dilemma. What choice do they have other than to get on Medi-Cal?”
Donnelly of Project Inform pointed to low numbers of those with HIV/AIDS leaving ADAP and moving into Covered California.
“Out of 7,500 people who are eligible, only about 800 have made the transition,” she said. “That shows you how concerned they are about affording drugs, and how unsure they are about the new system.”
Advocates Call for New ‘Wraparound’ System
The federal Health Resources and Services Administration, the HHS agency that oversees the Ryan White Program, allows those who are newly eligible for Covered California to continue to receive Ryan White services temporarily. It isn’t clear yet how long the transition period might last. Patients have been hesitant to switch because of the lack of transparency in health plans’ drug formularies.
Because Ryan White is funded with discretionary federal money that can be cut at any time, Fox said California should establish its own “wraparound” service as soon as possible. Such a system would automatically fill gaps to provide patients with access to physician office visits, procedures and a reliable supply of drugs. The budget approved by the California Legislature and signed by Gov. Jerry Brown (D) this summer includes $3 million to expand such services, but it does not go into effect until January 2016.
“Ideally, all of this would have been ready on Jan. 1, 2014,” Fox said. “But everything happened so fast, we’re still left answering all these questions.”
“Once California gets its own wraparound plan up and running, then we’ll be in good shape,” Fox added. “We just don’t know when that will happen.”
Challenges for New Medi-Cal Beneficiaries
Education and health literacy are important for HIV/AIDS patients who are newly eligible for coverage through Medi-Cal and Covered California, advocates said. Patients and providers facing new challenges in coordinating care need to ensure HIV patients stay on their meds, advocates said.
“Medi-Cal expansion and Covered California is a very, very good thing,” said Fox. “But this is a segment of the population that has only really known the Ryan White Program as their avenue to get their care and medication. Overall, the need for health literacy is huge throughout our entire community, but it especially hits the HIV and LGBT population because they’ve been shut out of health care for so long.”
Although the rate of new HIV cases is decreasing nationally in some segments of the population, Fox is concerned about the future for the people his organization works with every day.
“It’s a really vulnerable population that might not understand how much it takes to be healthy,” said Fox. “We really have to have a solid system in place to reach these people.”