Medicaid is a lifeline to HIV care for roughly half of those living with AIDS and 90% of all children living with AIDS. Seven of ten public dollars spent on AIDS care come from Medicaid. The program pays for inpatient, outpatient, home healthcare, prescription drugs and medical supplies. Over the next four years, Medicaid is one of the programs that will be slated for cuts, "reforms", or inadequate funding as the President and Congress try to balance the federal budget. The danger in budget cuts, particularly to public health and education, is that costs are shifted to the state and local governments which often do not have the money to cover costs or have different spending priorities. The real needs of people then go unmet. At a time when advances in research have renewed optimism about treatment but increased the costs of treating HIV, Medicaid and other important health programs must be enhanced and protected, not targeted for deficit reduction.
Even without cuts or proposed "reforms", people living with HIV/AIDS face challenges within the Medicaid system. Medicaid is a joint program of the states/territories and the federal government. Although it is intended as a healthcare safety net for low-income people, it currently serves only 62% of poor Americans. About half of the 35 million people covered by Medicaid are children, 7.6 million are women, 4.3 million are elderly and 5.4 million are blind or disabled. Many of the regulations and protections in Medicaid are developed by the Healthcare Financing Administration (HCFA). The individual state programs must comply with federal mandates, but they are also allowed a lot of autonomy in deciding who qualifies, what the benefit packages are and how the programs are run.
The application process for Medicaid and other public benefits can be daunting. If you are applying for Medicaid (Medi-Cal in California) you must meet criteria in one of 27 federally defined "categorically needy" groups. Examples include income level, disability requirements, eligibility for other benefits, age (over 65 or under 7), or pregnancy status. The specifics vary state to state, so it is vital to understand what is available. If you are considering moving to another state, make sure the benefits and eligibility are comparable. The Access Project at 1-800-734-7104 can help with state information and contacts.
To begin the application process, collect all written information explaining the program. Pay close attention to eligibility criteria, timelines for filing, waiting periods, disability requirements and financial restrictions. People with HIV/AIDS generally qualify if they are unable to perform "substantial work" due to HIV/AIDS. Therefore, it is important to get copies of your medical records and keep your own health notes. The more information you have, the easier your access to benefits. Keep track of symptoms such as night sweats, fatigue, lack of concentration, eating difficulties, pain, treatment reactions, weight, etc. Request to have your notes entered into your medical records. It is helpful to have someone wade through the benefit information and application procedures with you. If you have access to benefits counselors who are HIV specialists, use their help. Community-based organizations, AIDS service organizations, case managers and eligibility workers can also help.
Accessing quality care within the current Medicaid system can require work. Studies show that patients of providers who are experienced with HIV stay healthier and live longer than those whose providers have limited HIV experience. Given the current complex, quickly changing HIV treatment environment, both clinicians and researchers have stressed the importance of HIV knowledgeable care providers. Yet, even for people with private insurance, finding a physician with good HIV treatment skills can be difficult. It is particularly hard to find a care provider who is both knowledgeable and empathetic to women with HIV. Because Medicaid typically pays less than private insurance, Medicaid recipients may find it even harder to access specialists.
In areas hardest hit by the epidemic, there are many HIV specialists who accept Medicaid and/or work in public health clinics. While these clinics generally require longer waits, many have a high standard of HIV care. People in rural or less impacted areas can have a much more difficult time finding a qualified provider. In some states, programs have been developed to drive people to quality care providers. One of the best ways to find an HIV specialist who takes Medicaid patients is to talk to other Medicaid recipients. Support groups, local community-based organizations and people with AIDS coalitions (PWACs) are all good places to exchange information. Many organizations are not able to recommend specific doctors but can provide a list of local HIV providers. The AIDS Clinical Trial Unit (ACTU) and CPCRA (Community Programs for Clinical Research on AIDS) sites nearest to you may also be able to refer you to an HIV-experienced doctor in your area. Contact them by calling 1-800-TRIALS-A.
Another challenge within the Medicaid system can be getting prescription drugs and viral load tests. Not all AIDS drugs are equally effective, and none of them can be used effectively without also using diagnostic measures like the new viral load tests. All Medicaid programs cover some prescription drugs. But not all drugs are available and some require long pre-approval processes. Your state’s program may not cover the needed diagnostic tests or the best drugs, or even those minimally required. Also, the amount of money the individual has to pay for a drug may be restrictive. While some states have few limitations on drugs, others place caps on the number of drugs you can get through Medicaid in a month. In some states, there are drugs that require prior approval and do not count toward your limit. It is vital to understand the local regulations on prescription drugs and what is available on the covered list of drugs (formulary). People have circumvented some drug limitations by getting prescriptions 60 or 90 day supplies of some drugs in alternating months. This approach has to be carefully worked out to avoid lapses in drug access. At least one state uses its AIDS Drug Assistance Program (ADAP), an HIV drug delivery program funded through the Ryan White CARE Act, to cover drugs for Medicaid patients hampered by drug limits.
Some state Medicaid programs, including New Jersey, Indiana, New Mexico, Oklahoma, Alabama and Texas, are not covering viral load tests. People in such states may be able to access the tests through patient assistance programs. For more information on such programs, call the Project Inform hotline. It is also important to educate state officials as to why access to viral load is necessary and to advocate for reimbursement through Medicaid.
Although the cost of funding Medicaid has slowed dramatically in the past year (a trend that is likely to continue), Medicaid expenditures in previous years were growing at alarming rates. Working on the theory that managed care, particularly the tightly controlled Health Maintenance Organization (HMO) system, can help reduce Medicaid costs, many states have been moving quickly into Medicaid managed care. As of April 1995, 44 states contracted with managed care organizations to provide services to Medicaid recipients. As of February 1996, 17 states have implemented managed care programs for disabled Medicaid beneficiaries, and six of the programs are mandatory for most or all disabled individuals. There will be continued movement into managed care in the future.
Managed care brings another set of hurdles for Medicaid recipients in terms of access to both adequate care and prescription drug services. Many managed care systems work with "capitated" payments; rather than paying for each service rendered, the insurer (the Medicaid program) pays a set fee for an individual regardless of the amount of care provided. Under capitated systems, there is incentive for the doctor or medical group to limit care, because they will receive the same amount of money regardless of how much care they provide.
In order for states to move into managed care they must file a waiver with HCFA outlining their intent for implementation. Advocates should watch this process closely, as safeguards for people living with HIV can be detailed in this waiver. Another major challenge for people living with HIV, their advocates and public health officials is to ensure that each individual entering the system gets enough information to effectively evaluate the managed care plans offered. Getting the level of information necessary to determine if a managed care plan will meet an individual’s needs is difficult even with private insurance. A good model for information dissemination has not yet been developed in the move to Medicaid managed care.
Most managed care organizations, particularly HMOs, have not demonstrated an ability to fully meet the needs of people with chronic or life-threatening disease. Areas of concern include access to specialty providers, access to appropriate treatment, and access to cutting edge treatment information. A major challenge will be to ensure that HMOs are ready to care for HIV-positive individuals and that Medicaid recipients with HIV have sufficient information to choose a plan wisely.
Meanwhile, President Clinton has suggested a $22 billion cut over five years in federal Medicaid funding, including a cap or limit on payment per beneficiary. In a system that already has restrictions and challenges for people living with HIV, this proposal will almost certainly deepen existing problems. HIV, when treated effectively, is one of many higher cost illnesses. Unless states have the willingness and the necessary funding to pick up the extra cost, financial caps are likely to result in broader restrictions on high cost prescription drugs and monitoring assays. Reduced payments may make it more difficult for experienced HIV doctors to accept new Medicaid patients. People with higher cost chronic and life-threatening illnesses would likely suffer disproportionately under such a proposal. Recent encouraging news that the new treatments have reduced the overall cost of healthcare for people with HIV/AIDS might sound helpful, but it is unclear whether this cost reduction will be maintained over longer periods. For now, all it means is that the new drugs have prevented expensive hospital visits for a substantial number of people. But when the high cost of the drugs is added up for many years of treatment, the apparent short-term cost savings might evaporate.
Medicaid is still the most important AIDS care program and must not only be maintained at its current funding level but also enhanced to better serve people with chronic and life-threatening illnesses. Additionally, movement into Medicaid managed care must be closely monitored on the local, state and federal level to ensure protections for people living with HIV/AIDS. For more information on how you can help monitor Medicaid and let President Clinton and Congress know that this program is important to you and people you know, please join the Treatment Action Network or call PI at 415-558-8669.