In March 2010, the Patient Protection and Affordable Care Act was signed into law. It is the most important piece of health care reform legislation since Medicare and Medicaid were created in 1965. Health care reform presents a great opportunity to increase access to affordable care, treatment, and prevention services. But the devil is in the details, and its potential depends on reform being implemented in ways that truly meet the needs of people with HIV. In addition, there are shortcomings in the law that the HIV community must address.
The health care reform law means major changes are on the horizon for our entire health care system, and for HIV care in particular. We must begin an open and honest discussion about what these changes mean for those living with HIV. In this changing environment -- one in which thousands of people with HIV will have access to public and private insurance for the first time -- the role of Ryan White programs will change dramatically. Ryan White programs have been the primary providers of HIV care, treatment, and services for over 20 years. Yet in recent years funding has fallen far short of demand, and people are increasingly unable to get the care they need. Health care reform will greatly help to address the problems caused by inadequate funding and increased need.
The future of HIV care must include integration of Ryan White services into newly created health care systems. This is no small task and will involve difficult decisions and changes to the current order. We must work to make sure these newly created opportunities work and that the inevitable challenges are addressed so that all people with HIV get the care they deserve.
Nearly 30% of people with HIV are uninsured, and up to 59% are not in regular care. Medicaid's requirement that a low-income person with HIV be disabled by AIDS to be eligible for the program has been a huge barrier. The single most important piece of health care reform for people with HIV is the elimination of this cruel "catch-22."
Starting in 2014, low-income people with HIV will no longer be forced to wait until they are disabled by AIDS to be eligible for Medicaid. Instead, most people who make up to 133% of the federal poverty level (FPL; about $14,000 for an individual and $29,000 for a family of four) will be eligible based on income alone. In addition, people newly eligible for the program will be entitled to a benefits package that includes, at a minimum, the same "essential health benefits" required for all health plans sold in the private insurance exchanges created by the health care reform law.
Uninterrupted access to medication is essential for the treatment of HIV. Currently, Medicare Part D has a funding gap known as the "doughnut hole" (people are responsible for paying $4,550 for their meds after Medicare has paid $2,830) leaving many unable to afford lifesaving medications. The following reforms will help people with HIV:
Photo: Jonathon Berliner.
People with HIV (as well as millions of others in the U.S.) will be able to purchase private insurance more easily. Starting in 2014, every state will be required to put in place an exchange that will serve as a marketplace for people to purchase individual and small group health insurance plans. Subsidies will be available to people who earn up to 400% of the FPL (about $43,000 for an individual) to make private insurance more affordable. Plans sold through the exchanges must include "essential health benefits," the details of which will be determined by the federal government.
Because of harmful insurance practices, it is currently not possible for a person with HIV to buy individual private insurance. In addition, the private coverage available is often limited and does not cover the HIV services needed. Health care reform eliminates many of these harmful practices.
Millions of new dollars invested in prevention initiatives, community health centers, and expansions of the health care workforce will mean that people with HIV will have access to comprehensive care from a variety of new sources. Community health centers, for instance, will receive $11 billion over the next five years to expand. This will allow some Ryan White clinics to become Federally Qualified Health Centers and provides an opportunity to ensure that existing community health centers provide necessary HIV care, treatment, and prevention services. New investments also mean that many newly insured people with HIV will gain access to HIV prevention services and that there will be more health care providers available.
Health care reform represents a huge shift in both the health care system and the philosophy behind it. The emphasis on prevention and wellness, community interventions, and integrated models of care has major implications for HIV services and providers, particularly with regard to the Ryan White program. For many people with HIV, care has been provided by distinct programs in separate health care settings. Through these programs, we have developed expertise in coordinated and "whole patient" care, creating a blueprint for the "health home" models that feature prominently in the health care reform law.
But the health care reform train is out of the station. Even the greatest supporters of HIV care and Ryan White programs in the administration and Congress are telling us that the current separate approach to HIV care is no longer tenable. They insist that it will be in the best interests of the thousands of people with HIV who will have access to public and private insurance for the first time for us to put our efforts into making sure that health care reform works for people with HIV.
We know that even after health care reform is implemented, there will continue to be a need for the specialized HIV care, treatment, and support services provided through the Ryan White Program. So we must begin thinking about what the future of HIV services in general, and Ryan White in particular, should look like. This is especially important given the fact that Ryan White funding has not been enough to meet demand. Moreover, if the HIV community continues to rely solely on Ryan White to ensure that the needs of people with HIV are met, we will have missed an important opportunity to gain access to the billions of dollars in new funding streams included in health care reform. Further, we will have missed an opportunity to integrate the coordinated service delivery model that is the hallmark of the Ryan White Program into the new, larger-scale reforms.
Despite the significant strides that health care reform offers in combating HIV (increasing access to Medicaid and private insurance, eliminating harmful and discriminatory insurance practices, increasing prevention efforts), the reform that members of Congress courageously passed last year is in danger of repeal. We cannot let the promise that reform holds for millions of Americans fall victim to a partisan attack.
The Ryan White program has been an essential source of care for thousands of people with HIV, and will continue to provide important services even after some of the major health care reform provisions go into effect. Given the funding difficulties that Ryan White faces and the changes brought about by health care reform, however, we cannot rely on Ryan White alone to ensure that HIV treatment needs are met. We must think creatively about how to integrate its comprehensive services and skilled providers into broader systems.
Ryan White programs offer an important blueprint for the kinds of services needed by people with chronic illnesses. In many ways, Ryan White programs serve as a best-practices model for complete and cost-effective care. We must ensure that these models are integrated into broader health care systems. This means starting conversations with providers, advocates, and lawmakers about how the services that people with HIV depend on can be integrated into community health centers, Medicaid, and private insurance.
The health care reform law requires that all plans sold through insurance exchanges, as well as the benefits offered to people newly eligible for Medicaid (those who were not eligible for Medicaid on the date the law was enacted), include "essential health benefits." This package must contain ambulatory and emergency services, hospitalization, maternity and newborn care, mental health and substance use services (including behavioral health treatment), prescription drugs, rehabilitative services and devices, laboratory services, preventive and wellness services, chronic disease management, and pediatric services (including oral and vision care). Because the U.S. Department of Health and Human Services must define the specifics of the package, advocacy is needed to ensure that the benefits meet the wide-ranging needs of those who will be entitled to them, including people with HIV.
We are in the midst of an unprecedented AIDS Drug Assistance Program (ADAP) funding shortage (see "The ADAP Crisis: Waiting for Meds" in this issue). The result has been an access-to-care and public health crisis, with over 8,000 people currently on ADAP waiting lists throughout the country. States have also enacted other cost-saving measures such as limiting the drugs covered by ADAP. We must put pressure on state and federal lawmakers to ensure full funding of ADAP, now and through 2014, when the Medicaid expansion will offer prescription drug coverage to most low-income people with HIV.
In July 2010, President Obama announced a National HIV/AIDS Strategy (NHAS), detailing goals and priorities to address the AIDS epidemic in the U.S. and providing a roadmap for drastically cutting the number of new HIV infections, increasing access to care and treatment, and reducing health disparities. As a community, we fought hard for the NHAS, and we must be prepared to continue to fight for its full implementation. Advocates should work with federal agencies, state health officials, and community-based organizations to implement NHAS provisions, such as supporting state applications for "1115 waivers," which are needed to immediately expand Medicaid to people with HIV who are not disabled.
Today, Medicaid is an essential lifeline to care and treatment for many people with HIV. Starting in 2014, Medicaid will become an even more important source of care for thousands of currently uninsured people with HIV who will be eligible for Medicaid because of health care reform. To make sure that Medicaid is able to meet this need, HIV advocates should join forces with others outside the HIV community to protect against harmful cuts to the Medicaid program at both the state and federal levels.
There are many unknowns regarding health care reform, and the HIV advocacy community must be ready to respond to setbacks. Whether Congress, the President, or state governments have the political conviction to fulfill the promise of health care reform in ways that most benefit our community is an open question.
That being said, now is not the time to ignore the tremendous opportunities presented by the new funding and innovative service delivery initiatives provided through health care reform. Instead, we should be working to defend the law and to ensure that Ryan White services, providers, and models of care are integrated into health care reform initiatives. The role of Ryan White in health care reform is a complicated issue, and the HIV community will benefit from an open dialogue about the best way forward.
Robert Greenwald is the director of the Legal Services Center of Harvard Law School's Health Law and Policy Clinic and Director of the Treatment Access Expansion Project (TAEP). Amy Killelea is a clinical fellow and attorney with the Clinic and TAEP.