There are more than a million people living with HIV in the United States today. The fact that we have so many people living and thriving with HIV — as opposed to the million who die globally each year — is a testament to the biomedical and policy advances made over the past four decades.
In 1995, approximately 50,000 people in the U.S. were dying annually from AIDS. Today, that number is under 7,000. Advancements in treatment that allow people to live longer with HIV also explain how today, half of all those living with the disease in the U.S. are over 50. I’m grateful we are closer than ever before to ending the nation’s HIV epidemic. But a proposed rule change to Medicare Part D from the Trump administration could threaten this progress.
In November, the Trump administration proposed eliminating this protected class status for approximately 45 million people receiving drug coverage through Medicare Part D, including over 250,000 people living with HIV.
Under this proposed rule change, the Trump administration gives tremendous authority to insurance companies to make decisions about treatment, decisions that should be left to individuals and their doctors. We’ve seen what happens when insurers have this kind of power — people lose access to the treatments they need. And people die.
Between 2014 and 2016, advocates lodged formal complaints with the Department of Health and Human Services (HHS) in more than a half dozen states, alleging discrimination against people living with HIV by several insurers in ACA marketplaces. The insurers required HIV patients to pay the highest out-of-pocket costs, even for generic HIV medications, regardless of their insurance plan. This is not controlling costs, this undermining care.
The Trump administration’s proposed rule would clear the way for prior authorization — a hurdle that delays and discourages people from getting their medications. Conclusive evidence shows that delaying treatment in people diagnosed with HIV endangers their health and delays viral suppression, which stops the disease progressing to AIDS and prevents death. Just as important, when a person is virally suppressed, they cannot transmit the virus to others. President TrumpDonald TrumpNorth Korea conducts potential 6th missile test in a month Kemp leading Perdue in Georgia gubernatorial primary: poll US ranked 27th least corrupt country in the world MORE’s proposed change to Part D would make that achievement nearly impossible.
Trump’s proposal could also result in “step therapy,” meaning insurers could force people living with HIV to try older, less effective, but lower cost treatments first, rather than the treatment that their clinician deems most effective and best tolerated by the individual.
Scott Daly from New York has been living with HIV for nearly 30 years and relies on Medicare Part D for his prescription drugs. He takes three different medications to manage his disease, but one of the side effects is higher cholesterol. His doctor prescribed an additional medication to lower his cholesterol, while not interfering with his HIV treatment. This regimen was successful for 12 years. However, before he was on Part D, Scott’s insurance company refused to pay for his cholesterol medication unless he first “proved” another lower cost drug didn’t work. As one might expect, it didn’t work, putting his health at risk, and took months before his insurer agreed to cover the effective treatment plan prescribed by his doctor.
Scott summed it up best in his testimony before the New York State Legislature in 2015 during deliberations on a similar rule change at the state level: “When you’re living with a chronic illness and taking multiple medications, even the slightest change can have a domino effect on your overall health. Step therapy puts patients like me who are stable on proven medications at risk unnecessarily… Failure on this new drug would mean failure of the entire regimen, which has been successful keeping me virally suppressed for the past 10 years.”
When the Trump administration proposed the rule change, HHS Secretary Alex Azar said he was fulfilling Trump’s “promise to bring tougher negotiation to Medicare and bring down drug costs for patients, without restricting patient access or choice.”
While reining in drug prices is a worthy goal, there is a right way and a wrong way to do it. Preventing access to life saving treatments by removing the Medicare Part D protected class status is wrong for people living with HIV and it’s wrong for public health.
By 2030, some 70 percent of people with HIV will be over 50, and over the next two decades, the number eligible for Medicare Part D will more than double. Hundreds of thousands of people could face delays or be prevented from getting the specific treatment their clinician deems most appropriate to keep them healthy and alive. It could also result in limitations on the prevention benefits of viral suppression among a growing population of people living with the disease. This could lead to a costly resurgence in the HIV epidemic across the country.
A similar change to Medicare Part D was rejected five years ago under the Obama administration, and it must be rejected again now. More than 45 million lives depend on the protected class program, including 250,000 living with HIV.
That’s why so many individuals, providers, and advocates are sharing their stories through ‘My Status My Medicare,’ and urging the Trump administration to abandon this harmful proposal. We must maintain the protected classes to ensure the health of people living with HIV and to protect people from transmission. Doing so will save lives as well as costs.
Jesse Milan Jr., JD, is president and CEO of AIDS United in Washington, D.C. He has been living with HIV for more than 30 years.