"Of all the forms of inequality, injustice in healthcare is the most shocking and inhumane."
-- Martin Luther King
Some forty years since these words were spoken, the United States remains the only Western industrialized country that hasn't found a way to provide healthcare to all its citizens. Although government programs like Medicaid and Medicare have done an admirable job of serving vulnerable people, they remain part of a fractured system with many gaps.
Tax cuts benefiting the wealthy, war spending, and a sluggish economy are increasing the national debt while decreasing our ability to pay for health care. At the same time, the cost of care is rising considerably. In 2002, healthcare costs increased by 8.3%, the highest since 1991. These increases, coupled with less available funding for healthcare, have caused cutbacks and restrictions in the programs that people depend on for life prolonging care. (See ADAP article.)
As of 2003, 45 million Americans were uninsured, with millions more under-insured. Rates of those without health insurance are higher among people of color. In 2002, 14.2 percent of whites were uncovered, while 20.2 percent of African Americans lacked insurance as did 18 percent of Asian and Pacific Islanders and 32.4 percent of Latinos. Most of the uninsured are working, suffering from a long-term trend of fewer employers offering health coverage. Even those who have employer-based insurance are hurt by the trend toward fewer options and less generous plans, leading to burdensome out-of-pocket costs.
About a third to a half of people with HIV are estimated to be in medical care, and only about a third of those have private insurance. Between 70 and 83 percent either depend on public programs or are uninsured. Half depend on Medicaid and Medicare. It is public programs that are most clearly showing the increasing strain as they suffer cutbacks and restrictions. In order to ensure that we can advocate for these programs, it's important to understand them.
Medicaid and Medicare are entitlement programs, meaning that those who qualify must receive covered benefits. However, Medicaid is a joint program run by the federal government and the states, and each state has great flexibility in whom it serves and the benefits it provides. Medicare, on the other hand, is a uniform federal program. For full descriptions of Medicaid and Medicare, visit the Kaiser Family Foundation Web site at www.kff.org.
Most people with HIV enter Medicaid through disability. In general, the state is required to use the disability criteria established for the Supplemental Security Insurance (SSI) program, but can choose to use a more restrictive definition. To qualify, an individual has to have a severe "medically determinable physical or mental impairment" and be unable to engage in any "substantial gainful activity." These determinations can take a long time and require a lot of paperwork. Even though people with HIV can qualify for presumptive eligibility, meaning they get faster access to benefits, in most states, they have to document one or more of a specified listing of opportunistic infections, cancers, or conditions.
To qualify you must also meet income and asset requirements, which are set by the state and can differ widely state by state and within state by category of beneficiary. Because states set many financial requirements, in good economic times they may choose to invest in health and cover more people. However, when times are difficult, states can change eligibility requirements, leaving some without healthcare.
Eligibility is different for immigrants, however. Undocumented immigrants are not eligible. States can cover legal immigrants residing in the country before August 22, 1996 if they meet all the other requirements. Most legal immigrants who entered the U.S. after that date have to wait five years from their date of entry and live in a state that chooses to cover them. In addition, you must be a resident of the state offering the Medicaid coverage.
Medicaid benefits are divided into two categories: mandatory and optional. There are twelve mandatory service categories and a range of optional categories. For example, physician visits, lab and x-ray, and hospital in-patient are considered mandatory services, while prescription drugs, targeted case management, and personal care services are considered optional services. Notably for people with HIV, prescription drugs fall in the optional category. However, all states cover prescription drugs and some additional optional services.
Each state has the discretion to limit the scope of services, although it must comply with some federal rules regarding benefits. For example, the state can't discriminate by limiting services based on a particular diagnosis, type of illness, or condition. People who are eligible for Medicaid are also entitled by federal law to get services that are medically necessary, although what this means can vary state to state.
Medicaid is a comprehensive safety-net healthcare program, and it is also complex and varies widely from state to state. Understanding your state program generally requires help from either an experienced benefits counselor or case manager. One way to begin to understand your state Medicaid and its services for people with HIV is to visit www.atdn.org and click on The Access Project. You will find a synopsis of your state program and contact numbers. You can also call the Project Inform hotline at 1-800-822-7422 for a referral to a benefits counselor in your area.
Most people with HIV qualify through disability. In order to qualify, you must have worked for a specified period of time, established disability, and completed a two-year waiting period. Generally, if you receive Social Security payments, you are eligible after the two-year waiting period.
There are no income or asset requirements. Medicare serves anyone who is eligible regardless of previous health history.
Part A provides inpatient hospital services, skilled nursing facility (SNF) benefits, home health visits following a stay in the hospital or SNF, and hospice care. Part B is voluntary and covers physician and outpatient hospital services, annual mammography and other cancer screenings, and services such as laboratory procedures and medical equipment.
Medicare also has a managed care option called Medicare + Choice. Those plans provide both A and B services to beneficiaries.
Unlike Medicaid, Medicare is administered by the federal government, so it doesn't have the wide variance that Medicaid does. Medicare also offers a higher reimbursement to providers, making it easier for beneficiaries to find providers. However, it also has relatively high cost sharing obligations that can be difficult for beneficiaries.
In addition, the prescription drug card that is currently being offered to beneficiaries is confusing and difficult to use. Many people haven't taken the option due to lack of knowledge and, for some, the discounts offered don't represent a significant savings.
In the past couple of years, the Bush Administration has tried to cap federal spending through a block grant or a set amount of money that would go to each state. The only way the state could respond to any program growth would be by spending state money. People with HIV and many others would suffer greatly under the enactment of block grants, likely losing services and even eligibility. Fortunately, Congress and governors have been concerned about the idea of block grants and the proposals have stalled.
In 2003, in recognition of states' fiscal crises, Congress passed a temporary increase in the FMAP, which ended in June 2004. Forty-two states reported that the increase helped with their Medicaid increases, 27 reported that they avoided, postponed, or minimized program cuts, and all reported that the end of the increase will bring challenges. Legislation has been introduced that would renew this temporary funding.
For advocates, fighting cuts at the state level has become a critical part of protecting Medicaid programs for people who need them. We also have to monitor waivers. States are allowed to submit waivers to the federal government that would remove some beneficiary protections, establish cost sharing obligations, allow changes in benefit packages, and make other important program changes. Waivers are often enacted with an eye to cutting or containing costs. When cutting costs is the primary goal, the outcome is likely to hurt people's healthcare. The waiver process is typically long and bureaucratic, but it is essential to follow and provide input.
The Medicare prescription drug benefit has many potential problems. The concerns that are most pertinent for people with HIV are included in The Medicare Prescription Drug Benefit -- Issues for People Living with HIV/AIDS. You can view this document at www.projectinform.org/tan/0408mcpoints.html. Advocates are insisting on the creation of sufficient information for consumers to help them understand and utilize their benefit, implementation of a sufficient appeals process, and assurance that the formularies (lists of available drugs) are inclusive of necessary medications.
The regulations that will govern the benefit were in the public comment period until October 4th. The HIV Medicaid and Medicare Working Group, made up of national and regional HIV/AIDS organizations, issued comments and provided information to help other interested individuals and groups submit comments as well. To get more information on Medicare benefit advocacy, visit the HIV Medicine Association (www.hivma.org). To join the Work Group, email Project Inform's Treatment Action Network (firstname.lastname@example.org) or The Access Project (email@example.com).
Medicaid and Medicare are the backbone of HIV care. They are also the only attempt in the U.S. to provide healthcare for low-income and vulnerable populations. We can't allow the work of the last 30 to 40 years to protect the health of Americans to be rolled back due to misplaced political priorities. People with HIV and their advocates have to understand and fight for the programs we depend on.
Anne Donnelly is Public Policy Director of Project Inform in San Francisco.