A lot is happening these days that most of us are finding, frankly, pretty hard to believe. But it is not a dream. Donald Trump, who ran on repealing the Affordable Care Act, is now our president, and Republicans, who control the entire Congress, wasted no time and have already set in motion the process to repeal parts of health care reform. As someone who has advocated for years to ensure that people living with HIV have access to quality and affordable care and treatment, and worked with the Obama administration to make sure ACA implementation meets the needs of people with HIV, I am questioning how we are going to make America great for people with HIV without the ACA.
While the current law is not perfect and needs improvement, the ACA has provided health care coverage to more than 20 million Americans, including tens of thousands of people with HIV. Prior to the ACA, private insurance companies were allowed to exclude people with a preexisting condition. Now people living with HIV can purchase coverage and access health care and lifesaving medications to keep them healthy.
The ACA expanded access to Medicaid for low-income people with HIV. Prior to the ACA, low-income, childless adults with HIV (which is not considered a disability) had to progress to AIDS to become eligible for Medicaid. Now states are provided the option to expand their Medicaid program so that low-income individuals, no matter their health status, can receive health care. Today, Medicaid is the largest source of insurance coverage for people with HIV, covering 40 percent of people with HIV who are in care.
Under the ACA, important preventive services, including HIV screening, are covered by most private insurance plans and state Medicaid programs at no cost to the beneficiary. Repealing the ACA would prevent millions from receiving HIV tests that are critical to linking people with HIV to care and treatment, along with other preventive services, including STD, hepatitis B and C tests, hepatitis B vaccines, and alcohol and substance use counseling.
The ACA provides additional critical patient protections that directly impact people living with HIV. These include limits on annual out-of-pocket expenses, prohibiting lifetime caps on benefits, nondiscrimination provisions, prohibiting premiums based on health status, and access to essential health benefits, including prescription drugs and mental health and substance use services. These protections do not just apply to individuals buying insurance through their state marketplace, but for almost everyone in the country. As more people with HIV age into Medicare, the ACA also helps them by reducing patient cost-sharing for Medicare Part D drugs by gradually closing the “doughnut hole” (a temporary gap in coverage).
There is no question that in some markets the ACA is facing obstacles in its implementation. People with HIV are concerned with increased premiums, high deductibles, and high patient cost-sharing for prescription drugs. My organization even filed discrimination complaints against four insurance companies for charging people with HIV excessive costs for all HIV drugs and making them impossible to access without jumping through a prior authorization process. We were disappointed that the Obama administration did not do a better job of enforcing the ACA nondiscrimination provisions or limiting cost-sharing for medications. However, in many states the ACA is working for beneficiaries, insurers and providers. Instead of repealing the ACA, the focus should be on improving it to limit patient cost-sharing without compromising access to coverage.
If Congress repeals the ACA without simultaneously replacing it with programs that ensure comprehensive health coverage for the same if not more individuals, the private insurance market will become unstable, and people with HIV and others would lose access to the care and treatment that they rely on to remain healthy. People with HIV, who depend on a daily drug regimen, cannot risk losing access to their health coverage, not even for a single day.
President Trump has said that his replacement plan will be better and cheaper, and not reduce benefits. But we are still waiting to see his plan.
The legislation that eventually led to the ACA took years to develop, and implementing regulations and guidelines have taken additional years and continue even today. We in the HIV/AIDS communities, along with other patient groups, have worked diligently to ensure ACA beneficiaries have access to quality health care, including specialty providers and medications, at a price that beneficiaries can afford. While improvements can be made, we cannot afford to go backwards by eliminating or destabilizing the health care that the ACA provides.
CARL SCHMID is the deputy executive director of the AIDS Institute.