Should People With HIV Stock Up on Meds in Fear of Health Care Cuts?

HIV Advocates Say Don't Panic -- You'll Likely Be Fine. But There Are Still Things You Can Think About and Steps You Can Take.

Contributing Editor
Derrick Cox
Derrick Cox is working a second job to save money he thinks he may need for health care costs
Selfie by Derrick Cox

In the District of Columbia, Derrick Cox, 27 and diagnosed with HIV in 2011, is working both a day job (at a nonprofit) and a night job (as a cleaner) to save extra money. It's partly because he's afraid that a Trump-led Republican Congress is going to take away or slash his Medicaid and he'll need to pay for health care out of his own pocket. He usually sleeps only between 6 p.m. and 9 p.m.

"I'm doing this just in case anything drastic happens," says Cox, who adds that he has been using his health plan's 90-day med supply option to try to build up a back supply of HIV meds. "I want to be prepared."

In another state, S., 45 and living with HIV, is using his Medicaid to stockpile months' worth of HIV meds for the same reason -- and not only the HIV drugs he's currently on but also an HIV drug he formerly took that he's still receiving supplies of. He asked not to be named or located for fear this information would lead to his coverage being completely cut off. He says that a pharmacist friend told him that others with HIV are doing the same thing if they can, or even going on and off meds to build up a back supply.

And in Los Angeles, David, 41 and diagnosed with HIV in 2002, is a music-industry exec with private insurance who's nonetheless trying to stockpile his HIV med Genvoya (E/C/F/TAF) -- just in case he should lose his job and find that Trump and the GOP have destroyed his other health care options.

"I realize I'm operating from a place of complete and utter fear," he says.

As are a lot of us Americans with HIV/AIDS right now. That's understandable, given that President Trump and the Republican-controlled Congress have vowed to repeal the Affordable Care Act (i.e., Obamacare) and floated plans to radically slash Medicaid -- two programs that together cover hundreds of thousands of the roughly 1.2 million people living with HIV/AIDS in the U.S.

Since 2010, Obamacare market plans, plus the expansion of Medicaid eligibility that took place under Obamacare in 31 states (and the District of Columbia), have dramatically increased health care coverage for Americans living with the virus -- giving us steady access to treatment and care that not only keep us healthy but also basically uninfectious.

So, it's understandable that you might be freaking out about losing your coverage. But, before you do, you should know a few things, say experts. For one thing, Obamacare and Medicaid as we know it are not going to disappear overnight.

"Any changes will be several years down the line," says John Peller, who heads AIDS Foundation of Chicago. "We'll have some time to prepare once we know what those changes are. In the short-term, Obamacare plans are here at least for this year, and Medicaid won't change for a few years."

Additionally, the GOP is currently facing a massive backlash from constituents and even from members of its own party against repealing Obamacare, especially in the absence of a better plan. And many Republican governors are speaking out against undoing Medicaid expansion.

The time could not be riper for us, as people living with a chronic illness, to join this crucial fight in the streets and in our reps' offices to save these programs. So, divert the energy you're using to worry about losing these programs toward fighting to keep them.

Start by staying informed. Then, find the Indivisible group near you that is pressuring your reps to block the Trump agenda. Your reps will likely be home from D.C. in late February and attending town meetings, and they need to hear how badly you need these programs. (You can also contact your local HIV/AIDS agency to see whether they are part of these efforts.) Your personal story as someone clinging to Obamacare and Medicaid is invaluable right now.

Another thing: Even if, as a worst-case scenario, Obamacare were repealed and Medicaid were slashed ("block granting" is the GOP's euphemistic term for it), there would likely still be funding for the Ryan White CARE Act's AIDS Drug Assistance Program (ADAP), which was the pre-Obamacare coverage of last resort for Americans with HIV/AIDS and has long had strong bipartisan support.

"Ryan White funding is likely to stay somewhat stable," says Peller. And Bill McColl of the national advocacy group AIDS United notes that both Ryan White clinics and federally qualified health centers would still provide care.

But Ryan White funding usually covers only HIV needs. It's much better to have full health coverage under Obamacare or Medicaid. That's yet another reason why you should join the fight to save them. "We need people to #RESIST!" the Trump/GOP agenda, says Peller.

All that said, there are some practical steps you can take:

  1. Get 90-day mail supplies of your meds. Ask your health plan whether they allow this. Very often, you can refill a few days before you've exhausted a 90-day supply, thus allowing you to build up a back supply over time.

  2. Consider moving to a state with better health coverage, especially if you've already been thinking about this or have some other compelling reason to do so, such as work or family. California, New York and Massachusetts were all states that offered relatively generous ADAP programs and even some form of low-cost marketplace plans or expanded Medicaid before Obamacare -- and they likely would continue to do so even if the GOP were to gut those programs.

  3. Talk to your doctor about cutting your HIV dosing. This can only be done with certain regimens, based on how long they stay optimal in your bloodstream. I've been doing this for a few years with my regimen of Viramune (nevirapine) and Truvada (tenofovir/FTC), taking it every other night instead of nightly, and I've stayed undetectable. I worked this out very carefully with my doctor in increments over time. I would never have just done this on my own.

    The upside? I still get 30 pills monthly, so that allows me to build a back supply for travel or other emergencies. I also hope that it's cut in half my risk of long-term toxicities.

  4. Most of all? Fight for your health care! I've said it before and I'll say it again: If you've never been open about your HIV status or an activist before, now is the time. Call or visit your senators and your congressmember ASAP to tell them how much your Medicaid or your Obamacare means to you. Tell them your story! But, don't stop there. Use the links above to reach out to coalitions already fighting the fight. They need you now more than ever.