What Could Happen to Your HIV Health Care Under Trump -- and What You Can Do About It

Contributing Editor
Tim Murphy
Tim Murphy
Edwin Pabon

American people living with HIV/AIDS (including this writer) who get their health care through Obamacare, Medicaid, Medicare or Ryan White -- or some combination of these programs -- are rightly scared about what is going to happen to their coverage amid Trump's and Republican's plans to repeal Obamacare and remake Medicare and Medicaid.

At the moment, everything is in flux as Republicans try to figure out exactly which parts of Obamacare (if any) to retain and what to replace it with. That surely won't be an easy feat. No one's come up with a plan yet.

I asked three HIV health care experts -- Kenyon Farrow at Treatment Action Group (TAG), Bill McColl at AIDS United and Lindsey Dawson at Kaiser Family Foundation -- to sketch out three possible scenarios: best, middle and worst case for people living with HIV.

One thing is clear: In all the scenarios, your voice is needed. So, before you even read this, start by getting action updates from AIDS United about the role you can play. Then, reach out to your city or state AIDS services group to see whether they are part of efforts to lobby congressional representatives to preserve health care. If they're not, they likely can point you to local groups that are.

Here are three levels of scenarios on what may become of your HIV-related care in the new era -- and the role you can play to prevent the worst.

Worst Case Scenario: Total Destruction

Obamacare would be totally repealed, including popular provisions such as the requirement to cover preexisting conditions and young people on their parents' plans up to age 26. There would be no replacement except for the exorbitant, high-deductible, catastrophic private plans that were many people's only recourse to insurance prior to Obamacare -- the kind of plans that are essentially too expensive to use, let alone to buy.

Republicans would enact their longtime dream of passing a law for "health care savings accounts," which would not tax money Americans put into a special account for health costs. But, with premiums, deductibles and actual costs running into the thousands or even tens of thousands of dollars, most American's won't have this kind of money to save anyway.

Additionally, the 31 states that have expanded Medicaid eligibility under Obamacare (which has given health coverage to an estimated 19 million) would lose it. The only people qualified for Medicaid would be extremely low-income with an additional disability or pregnancy.

Moreover, Medicaid would be block granted, meaning that it would no longer be a program required by law to fund coverage for everyone who's eligible. Instead, the federal government would give a capped, flat amount of money to states to use as they saw fit for Medicaid, forcing states to make cruel choices about who gets covered for what.

Medicare would essentially become a private market-driven program, much like Obamacare is now. That means private plans would have leeway to raise costs and limit coverage for drugs and services if it were cost-effective for them.

All these cuts would mean that many people with HIV/AIDS would be thrown back on the mercy of the longstanding Ryan White CARE Act's AIDS Drug Assistance Program (ADAP), which was the main pre-Obamacare coverage route for people with HIV/AIDS who did not get coverage through their jobs, Medicare or Medicaid.

The ADAP program has long enjoyed bipartisan support in Congress. But, with new burdens on it, we could return to the George W. Bush days when the program was flat funded despite heavy need, which put patients in dozens of (mostly red) states onto waitlists for lifesaving HIV/AIDS medications and other drugs. What's more, strict eligibility requirements -- which vary from state to state -- could mean that some people would not even qualify to be put on a waitlist.

The ADAP program would likely go on paying premiums and drug copays for private plans. It did so pre-Obamacare, and it has helped many people living with HIV pay Obamacare premiums that often amount to $400-$700 per month, as people with HIV need the best and most expensive level of plans available.

However, this would only apply to states that offer decent and nondiscriminatory private coverage in the first place. For everyone else, ADAP would cover direct HIV/AIDS-related doctor visits and drugs but not necessarily other health conditions or needs, such as diabetes or high blood pressure -- and especially not major needs such as cancer treatment.

In addition, though ADAP has long enjoyed bipartisan support, it is not required by law to cover people as is Medicaid. Its success has been largely due to the tireless work of HIV/AIDS advocates on Capitol Hill. Its funding levels are regularly up for congressional review. An extreme-right GOP Congress could well decide that it is one of an array of "social programs" for the undeserving poor that are ripe for heavy cuts.

In this worst-case scenario, only people living with HIV who get coverage through very secure jobs are safe. Many would have to scramble for needed meds by applying to drug makers' charity programs or hoping that various nonprofit or state or locally funded treatment centers pop up here and there.

If this scenario may affect you, it might be the time to start stockpiling needed drugs by any means necessary -- perhaps by seeing whether you can switch from 30-day to 90-day supplies --or even to consider moving from a red state to a state such as New York, Massachusetts or California, which offered generous ADAP, Medicaid and other options for people living with HIV prior to Obamacare.

Middle Scenarios: States Can Choose Obamacare and/or Medicaid Not Block Granted

Congress would pass a law (already proposed by some moderate Republicans) saying that states may opt to keep Obamacare or replace it with options of their choosing. But, this would not guarantee that all aspects of Obamacare -- such as the requirement that everyone buy coverage or be taxed and that companies not discriminate against preexisting conditions -- would stay in place.

It would also not require the federal government to provide subsidizes to low- and middle-income Obamacare users, putting the remaining Obamacare plans out of reach for many.

Another middle-case scenario is that Congress forces all states to figure out their own health coverage but nationally retains some of the most popular protections of Obamacare, such as no discrimination against preexisting conditions or the basis of age, gender or LGBT status, as well as letting people stay on their parents' plans until the age of 26.

But the death of Obamacare components such as federal premium subsidizes for low- and middle-income users or the mandate that everyone buy coverage may make private plans cost more and cover less than they currently do.

Congress may also pass a law saying that states with expanded Medicaid can choose to keep it, which several Republican governors are fighting for, against their own party. If you live in such a state -- including Massachusetts, Michigan, Ohio, Arkansas and Nevada -- call your governor's office at once to say you want to be part of their effort to save expanded Medicaid. They truly need your voice.

The other middle-case scenario here is that, with enough vocal opposition, Medicaid would continue as is and not be block granted, ensuring funding for states that choose to retain their expanded Medicaid programs.

The Best Case (and Not Very Likely) Scenario: Single-Payer for All

The chaos caused by dismantling Obamacare and failing to replace it with something better would jolt the country into a heightened awareness that a single-payer plan (a.k.a. Medicare or Medicaid for all) is the only way to fix the health coverage crisis in America. Additionally, such a plan would have so much buying power that it could bargain down the exorbitant costs of drugs and medical treatment in the U.S.

A slightly less ideal version would be that Democrats offer robust, concrete solutions for the current flaws in Obamacare, such as letting the federal marketplace and the various state marketplaces add a "public option" (provided by the government) that would force the private options to be more competitive, offering more for less money.

Yet, at the moment, these are dream scenarios. With all the power in the White House and Congress, Republicans are poised to realize their longtime dream of gutting public health programs in favor of private markets with minimal government funding or regulation.

The power to stop these excesses lies with Democrats, who must be pressured to use every tactic in the congressional playbook to block or slow them. Even more, it lies with a handful of moderate Republicans (such as Sen. Bill Cassidy in Louisiana and Sen. Susan Collins in Maine) who have the power to thwart their party's majority vote.

The Power Lies With Us: Prevent the Worst by Acting Now

All of which is to say: The real power in staving off the destruction of health coverage for people living with HIV and other sick, poor and vulnerable Americans lies with us. Now more than ever, both Democratic and Republican lawmakers need to hear our real-life stories of what coverage has meant for us -- of how we'd get sick and die without it.

If you have never gone public with your HIV/AIDS status before, if you have never visited your representatives' offices in your district or in D.C., if you have never protested in the streets or engaged in civil disobedience to stand up for your rights, now is the time to do so.

The good news is that you don't have to do it alone. Massive networks are forming nationwide to save health care. Get action updates from AIDS United and join every effort you can. Contact your local HIV/AIDS clinic or service group to see whether they're part of activism and lobbying efforts you can join. And tell your Obamacare or expanded Medicaid story here, so you can be contacted to be part of the rescue campaign.

A nightmare scenario looms for people living with HIV. Only if we fight back hard starting today can we prevent the worst.