The first generation of AIDS crisis survivors is about to turn 65 and join the Medicare population, putting pressure on federal programs and spotlighting high prescription drug prices.

Over the next two decades, more than 600,000 people living with diagnosed HIV/AIDS will become eligible for Medicare, according to the Centers for Disease Control and Prevention. These individuals will not only be facing a disease that many expected to kill them years ago, but conditions that come with aging, and a complicated insurance system with high prices for the drugs they need to stay alive.

Medicare, too, could see financial problems as costs for the drugs grow. Gilead Sciences Inc. and Viiv Healthcare received over half of Medicare spending on antiretroviral drugs in 2016 while raising their prices significantly from 2012 to 2016. Analysts said these companies will face pressure not to raise prices, but that they will likely continue to do so anyway.

Medicare “is very ill-equipped to handle the needs of older HIV-positive adults,” Perry Halkitis, dean of the Rutgers University School of Public Health, told Bloomberg Law June 21. Halkitis is also the author of “The AIDS Generation: Stories of Survival and Resilience” and an authority on long-term survivors of HIV.

Doctors are “only beginning to understand the complexity” of being HIV positive and elderly, Halkitis said.

Impact on Medicare

Medicare is already facing an earlier projection of its Hospital Insurance Trust Fund running out and attempts from Congress to cut Medicare and another government insurance program, Medicaid, to balance the budget.

But people who work in HIV/AIDS policy and advocacy disagree on how much the new population of Medicare beneficiaries will affect the financial stability of Medicare.

There will be an impact on Medicare, especially because introductory prices for new treatments are “usually quite high,” Mark Hannay, director of Metro New York Health Care for All, told Bloomberg Law June 21. The organization is a health-care coalition that focuses on advocating for universal health care. Hannay has also previously worked at Act UP New York, an AIDS advocacy organization, and Gay Men’s Health Crisis.

Although 45 percent of people diagnosed with HIV are over the age of 50, they would only make up 2 percent of total Medicare beneficiaries when they reach 65, Mark Brennan-Ing, a senior research scientist at the New York City-based Brookdale Center for Healthy Aging at Hunter College, told Bloomberg Law June 22. The Brookdale Center for Healthy Aging is a research and advocacy organization that develops care for older adults.

According to a Kaiser Family Foundation analysis, approximately one-quarter of people with HIV are already on Medicare. The majority of those had been on social security disability insurance for two years and then were automatically enrolled in Medicare.

People who were first diagnosed with HIV in the 1980s are likely already on Medicare due to being disabled from not having antiretrovial drugs available to them, but people who were diagnosed later are likely not, so there are many people living with HIV who are not relying on Medicare yet, Halkitis said.

This is a “potential problem for the health-care industry,” and Halkitis said he expects it will put more financial pressure on an “already strapped system.”

Life Expectancy on the Rise

People living longer is a “major” success, but it adds to the burden on our health-care system, William McColl, vice president for policy and advocacy at Washington-based AIDS United, told Bloomberg Law June 22. AIDS United is an organization that aims to end AIDS through advocacy, awarding grants, and research.

“I doubt it’s going to balloon Medicare in ways that are unapproachable or unattainable by the Medicare system,” McColl said. “In some ways Medicare is well set-up for this” because they are able to negotiate the lowest possible cost for treatments, although they are unable to negotiate lower drug prices.

Dan Tietz, CEO of New York City-based Bailey House, told Bloomberg Law June 19 that he doesn’t think it’s going to make a “meaningful” impact on Medicare because of the small percentage of people with HIV/AIDS that will be on Medicare compared with the total Medicare population. Bailey House is an organization that provides support through housing and health services to people with or at risk of HIV/AIDS.

The cost of each individual to Medicare is driven by life expectancy, Ruth Finkelstein, executive director of the Brookdale Center for Healthy Aging, told Bloomberg Law June 25.

People who believe that Medicare beneficiaries with HIV will be expensive for the system fail to recognize that, “while life has been extended a lot, HIV is still a life-shortening condition,” Finkelstein said, and therefore people with HIV will likely not be on Medicare as long as other beneficiaries.

Rising Cost of Antiretrovirals

Antiretroviral drugs are a protected class of Medicare Part D drugs, which means that all Medicare Part D plans have to provide coverage for the drugs in that class. That means that pharmacy benefit managers and insurers aren’t able to negotiate “meaningful” rebates, Brian Rye, a senior health-care analyst at Bloomberg Intelligence, told Bloomberg Law June 20. Access to different medications is helpful for patients, but the costs to Medicare can be a source of frustration.

Manufacturer Medicare spending

Thirty-two percent of all Medicare spending on antiretroviral drugs in 2016 went to Gilead Sciences, Inc., an increase of 8 percent from 2012, according to a Bloomberg Law analysis. An additional 12 percent of Medicare spending on antiretroviral drugs in 2016 went to a joint HIV venture between Gilead and Bristol-Myers Squibb Co. to develop and commercialize fixed-dose combinations of HIV medications, an increase.

Gilead raised prices on their antiretroviral drugs covered by Medicare by an average of 34 percent between 2012 and 2016.

Viiv Healthcare received the next highest amount of Medicare spending in 2016, 22 percent. Viiv Healthcare raised prices on its antiretroviral drugs covered by Medicare by an average of 23 percent.

The two companies made up the largest portion of Medicare spending on antiretroviral drugs in 2016.

“There will continue to be pushback on pricing,” Bob Kirby, lead analyst for Fitch Ratings on pharmaceuticals and medical devices, told Bloomberg Law June 27. “Manufacturers are going to have to demonstrate the value of their medicines.”

“The pressure is not going away, it just puts more impotence on the RD efforts of these companies to make better drugs that meaningfully improve outcomes,” Kirby said.

Gilead Sciences, Inc. and Viiv Healthcare “probably will get some pressure” to stop raising prices, Rye said, but he said they will likely “continue with whatever strategy they wanted to, irrespective of criticisms from Congress.”

Drug Pricing

People with HIV are taking at least one pill on a daily basis, which can cost “well over $20,000 per year per person,” Kenneth Mayer, medical research director and co-chair of the Boston-based Fenway Institute, told Bloomberg Law June 21. The Fenway Institute is a research center within Fenway Health that focuses on ensuring access to health care for traditionally underserved communities

Prior to 2006, people with HIV/AIDS were paying for most of their prescriptions through Medicaid, the Ryan White HIV/AIDS Program, or state assistance programs. The Medicare Part D benefit, which covers prescription drugs, went into effect Jan. 1, 2006, and began covering part of those prescription costs.

The Ryan White HIV/AIDS Program is a federally funded and operated program that funds medical care and support services for people with HIV/AIDS. The program also funds the AIDS Drug Assistance Program (ADAP), which provides medications to low-income people living with HIV who have limited or no health coverage, including people on Medicaid or Medicare. ADAP also purchases health insurance for eligible people.

A 2018 study published in the journal Medical Care looked at the population eligible for Medicaid and Medicare and found that the transition from prescription drug coverage under Medicaid to Medicare in 2006 was associated with increased out-of-pocket spending for people with HIV/AIDS. The study also found that the transition was associated with an increase in ADAP use, which didn’t result in negative care outcomes for people with HIV.

Out-of-pocket costs for people with HIV can be “steep” with traditional Medicare, Hannay said.

Being on Medicare Part D can be scary for anyone who isn’t dual Medicare/Medicaid eligible or on ADAP because they might have to pay thousands of dollars for their prescriptions, Alexandra Remmel, the director of client and legal advocacy at the New York City-based Gay Men’s Health Crisis, told Bloomberg Law June 18. Gay Men’s Health Crisis is a nonprofit that works to provide HIV/AIDS care, advocacy, and prevention.

“There’s no way you can afford the meds and still exist” without Medicare, McKenna said.

Antiretroviral drugs are “not the biggest component of Medicare Part D drug spending,” Aaron Tax, director of advocacy at New York City-based SAGE USA, told Bloomberg Law June 21. SAGE USA is an organization that provides resources and support to elderly LGBT people and their caregivers. However, “the impact on out-of-pocket spending and individual drugs that aren’t getting those rebates are coming under more of a microscope.”

The biggest concern for older people living with HIV is their prescription drug costs. This population is “used to being in an employer-based plan or other plan where the costs were covered,” and they’re having to figure out how to pay for them now, Scott Schoettes, counsel and HIV project director at Lambda Legal, told Bloomberg Law June 25. Lambda Legal is a civil rights organization that focuses on protecting LGBT communities and people with HIV/AIDS through litigation, education, and policy.

An additional concern for long-term survivors of HIV/AIDS is the cost of newer, more expensive antiretroviral drug regimens.

HIV drug price at entry

A Bloomberg Law analysis found an upward trend of antiretroviral drugs coming onto the market at a higher price in recent years.

Many people who were infected with HIV prior to the advent of antiretroviral drugs “have resistance or are unable to use the most common drug regimens,” McColl said, which means that they have to use “much more expensive” regimens.

Impact on Care

People with HIV/AIDS “are trying to figure out how to survive with a changing insurance world,” Remmel said.

The biggest issues for people with HIV/AIDS is the cost of drugs and high copays in Medicare, Finkelstein said.

People with HIV need to choose their Medicare plan “carefully” to prevent large out-of-pocket costs, Tietz said.

The care of long-term survivors of HIV will be “costly,” especially because they typically die from complications related to AIDS, not AIDS itself, Charlie Ferrusi, program manager at the New York State Department of Health AIDS Institute, told Bloomberg Law June 21.

It is not a guarantee that dual eligibility for Medicare and Medicaid makes care affordable, Finkelstein said. For people who are dual-eligible, Medicare is their primary insurance and Medicaid helps fill in some of the financial gaps, but they don’t necessarily pay all the costs of HIV/AIDS care.

Long-term survivors are “experienced in their care and can advocate for themselves with their doctors,” so they should be able to transition to Medicare without having a lot of problems, Luigi Ferrer, community relations manager at Miami-based Pridelines, told Bloomberg Law June 20. Pridelines is a nonprofit that provides resources, including health services, for the LGBTQ community.

Some providers have heard concerns from people with HIV that moving to Medicare might force them to change their doctor. For long-term survivors of HIV, their doctor might be the person they see as having kept them alive for so many years, so it can be an important relationship to keep. It’s more common for providers to refuse Medicaid patients than those with Medicare, so having to change providers is less of a concern for people on Medicare, Tietz said.

“There’s a certain level of certainty that comes with Medicare that you know you’re going to get coverage,” Hannay said.

Care can differ on a state-by-state basis, Ferrer said, especially if people with HIV/AIDS choose a Medicare Advantage managed care plan. “It really depends upon which HMOs are licensed to work with the Medicare programs in the state.”

Efforts to change Medicare and/or Medicaid “have an outsized impact” on people with HIV/AIDS because so many of them are on one or both systems, McColl said.

“The threat of losing Medicare hovers over our head like another dark cloud,” Sean McKenna, who has been living with HIV for over 30 years, told Bloomberg Law June 21. “We really learn to depend on [Medicare].”

McKenna said he feels that he’s getting the same care through Medicare as he was while on private insurance. McKenna has been on Medicare since 1996 and is one of the long-term survivors who was automatically enrolled after being put on disability.

Long-term survivors also face the issue of continuing to receive care as they age. “Lots of long-term survivors have cognitive issues,” so they need help with understanding how to fill out the paperwork for Medicare, Medicaid, and ADAP, McKenna said. Some advocacy organizations are involved in helping fill out that paperwork, like Gay Men’s Health Crisis, but not all long-term survivors have assistance in doing so.

Aging

People with HIV/AIDS are also experiencing aging earlier than expected. Tax said older people with HIV are developing aging-related conditions earlier than uninfected people of the same age.

“People living with HIV, while they’re living longer and healthier, they’re experiencing conditions associated with aging,” McColl said. Doctors who are used to treating elderly people in their 70s are now needing to treat people in their 50s who have “complex treatment regimens.”

Some of the people who have been living with HIV since antiretroviral drugs were first released started treatments with medications that had high levels of toxicity and doctors don’t know the full implications of how that can affect their health now, Mayer said.

Older adults who’ve had HIV for an extended period of time can also have other health conditions that come with having HIV, and their health challenges tend to be around those other conditions, Tietz said.

Advanced HIV can cause chronic inflammation, which leads to an increased risk for heart disease and cancer, Mayer said.

Doctors are finding these aging issues out now because they weren’t able to study the effects of aging on people with HIV until recent years.

“No one knew we were going to get that far” to need doctors who could care for elderly people with HIV, McKenna said.

---With assistance from Christina Brady in Washington.