Proposed Medicare Rules Change Alarms HIV Advocates  

Photo: Volunteers with AIDS United. Photo via AIDS United, facebook

A change to the rules for Medicare Part D could put thousands of people living with HIV at risk, if approved by the Trump administration. The change would give insurance companies the power to force people living with HIV off of the medications they currently use.

The proposed changes have alarmed HIV advocacy organizations as well as other health related groups. Currently Medicare Part D has six protected classes, which includes antiretroviral drugs used to manage HIV. 

“So this is a very pressing issue for HIV population,” said Jesse Milan Jr., president & CEO of AIDS United. “Because as we age, our need for Medicare will continue to increase.” 

According to AIDS United these protected classes ensure people living with serious, chronic, and infectious health conditions can access the specific treatments their medical providers prescribe to them without interference from insurance companies. The reason these classes are protected is because for these specific conditions any interruption in drug access would result in significant and rapid health decline. 

The proposed rules change would give an insurance company the right to require a prior authorization before a particular prescription could be filled. It would also allow for policies like “step therapy,” where people are forced to start their treatment out with a lower priced drive and prove that it’s ineffective before being allowed to have the original drug a doctor prescribed to them. 

“And so that's really dangerous for people living with HIV, because it means your doctor has already decided based on all of your medical history, and all of your current medical conditions, which one of those [medications] is the absolute best for you,” Milan said. 

Equality Florida, the statewide LGBT rights organization, wrote an Op-Ed in the Miami Heraldalso coming out against the change. 

“As the leading LGBTQ organization in the state, we are speaking out because this new policy will have a disproportionate impact on LGBTQ Floridians. The state is already struggling to curb HIV transmissions and new diagnoses among gay/bisexual men and transgender women, which remain stubbornly high,” Equality Florida wrote. “As the fight to end HIV continues, we all must support policies that make access to the right medications easier, not harder, for those living with HIV. Florida is at the center of the current fight against the HIV in the nation, and the Trump administration’s proposal threatens hard-fought progress and the lives of all Floridians.”

According to Equality Florida there are more people over the age of 65 living in Florida than any other state. Additionally there are more than 100,000 residents who are living with HIV in the state.  

“South Florida has one of the highest populations of people living with HIV over the age of 55 as well. So it's really important for your readership,” said Kyle Murphy, Communications directorfor AIDS United.

The second issue is forcing people to try new therapies if they’ve already achieved viral suppression. 

“Viral suppression, of course, not only leads to greater health and longevity, for people living with HIV have no chance to transmit the virus to someone else, the virally suppressed will have no chance of transmitting the virus to someone else,” he said. “You are putting your own viral suppression at risk.” 

Ultimately if this change goes through it means the insurance companies would have more control over the doctor/patient relationship.  

A similar rules change was proposed under the Obama Administration in 2014 but was more narrow in scope and did not directly affect the HIV community.

When asked why these types of rules changes have been proposed under a Democratic and Republican administration Milan said: “The argument from the administration is that this could be a way of reducing drug costs to consumers. But we don't believe that is an effective way of assuring access to care and promoting the health and well being of people living with HIV.”

Murphy added, “this seems like low hanging fruit to people until they dig into the actual meat of the issue and realize there is a very specific reason why Congress carved out the six protected classes because this would have very serious implications on the health of these folks if they had any interruption in medications whatsoever.”

AIDS United is urging people who are concerned to visit they can send a message to their representative opposing the change. 

If the Trump administration moves with the proposed change Murphy hopes Congress will intervene, but if not, they may decide to pursue legal action to stop it. 

“All options are on the table,” he said. 

The deadline for public comment was Jan. 25. Murphy said that new rules can be finalized in as little as 30 days or as many as 180. But typically they take between 60 and 90 days. 

A slew of other health advocacy organizations have come out against the latest proposed changes including the American Academy of HIV Medicine American Cancer Society; Cancer Action Network; American Kidney Fund; American Society of Clinical Oncology; Anxiety and Depression Association of America; Community Access National Network; Community Oncology Alliance; Depression and Bipolar Support Alliance; Epilepsy Foundation; HIV Medical Association; Leukemia & Lymphoma Society; Lupus and Allied Diseases Association Inc; Mental Health America; The Michael J. Fox Foundation; National Alliance on Mental Illness; National Council for Behavioral Health; NASTAD; National Kidney Foundation; The AIDS Institute; Transplant Support Organization; and Women Against Prostate Cancer.