AIDS in America - Treatment

Life for a person who is HIV+ may be less harsh in the USA than in many other countries around the world, but it is still not always easy. Aside from having to face discrimination - both socially and in the employment market - there are issues surrounding access to treatment.

Many US citizens will be aware of the shortage in Africa of life-saving AIDS drugs, which is leading to the unnecessary deaths of millions. They are also likely to be aware of the US government's plan to spend US$15 billion fighting AIDS in the developing world - much of which will be spend on the provision of these drugs.

They might be more surprised to learn that it isn't only in the poorest parts of Africa that people die for lack of drugs - that it happens in the USA, too - and that it isn't rare.

How is AIDS treatment funded in the USA?

On April 8th, 1990 in the United States, a young haemophiliac named Ryan White died. He had become infected with HIV through the use of contaminated blood products and had become well known a few years earlier as a result of his fight to be allowed to attend public school. In 1990 the Ryan White CARE Act was passed by Congress. The aim of the act was to provide grants to improve the quality and availability of care for HIV+ people.

The FY2006 federal budget request to Congress in Feb 2005 totalled an estimated $21 billion for HIV and AIDS. Federal funding for AIDS programs falls into five basic categories - care, financial & housing assistance, prevention, research, global. Of these five categories, AIDS care spending is by far the largest, with the budget request for FY 2006 being US$12.6 billion - a 7% increase on 2005, and 60% of the total budget request. The majority of care funding goes out through the federal Medicare and Medicaid programs. The Ryan White CARE Act is the largest discretionary care program, and includes the AIDS Drug Assistance Program (ADAP).

Medicaid is a medical assistance funding program which is paid for by federal and state governments. It provides coverage for medical, dental, optical, mental, hospital, and long-term care costs for eligible people. It also covers prescription medication. Eligibility criteria vary slightly from state-to-state, but generally eligibility is based on one of the following : having children and a limited income, receiving or being eligible for Social Security benefits, being a pregnant woman and having an income below a set amount, or the person's family's assets being below $2000. Medicaid is supposed to be accessible only to people who have exhausted all of their alternative financial resources.

Medicare is a medical insurance program which provides health insurance to people who are 65 years old or over, or people of any age with kidney disease or certain other disabilities. Medicare Part A pays for necessary medical care given at specific, certified hospitals, clinics or hospices. Part A is free to those who are eligible, and does not cover prescription medication. Medicare Part B helps to pay for doctors, outpatient hospital care, ambulance costs, and other tests and services. If a person qualifies, this costs $66.00 a month, which can be taken out of social security. Part B pays for 80% of most of the services covered, unless the person is treated by a doctor or institution which doesn't accept Medicare, in which case the person must pay the full cost of treatment. In order to qualify for Medicare, someone must either : be over 65 and have had at least 10 years of Medicare-covered work, qualify for social security retirement or disability benefits, or be a kidney transplant patient.

AIDS medication can be very expensive, and there are many cases of people who have AIDS and who lack adequate private health insurance, do not qualify for either Medicare or Medicaid, and who have expensive treatment needs for which their income and assets are unable to provide. Without the correct drugs, these people will die, so in the USA there are a number of other sources of help for people in need of AIDS treatment, the largest of which is the AIDS Drug Assistance Program, covered by the Ryan White Act.
The AIDS Drug Assistance Program (ADAP) is intended to help HIV+ people with the purchase of prescribed AIDS medicines when they don't have private health insurance, don't qualify for Medicaid, and are unable to afford the cost of the drugs. Rather than one ADAP, there are actually 57, run separately by each state or US Territory and drawing their funding mostly from Federal government at a level which is not necessarily related to the level of need in that particular state. State contributions, where they exist, are usually higher in those states which have high prevalence levels and vocal AIDS advocacy groups.

Not everyone can afford AIDS drugs

ADAPs supply drugs 46 to about 135,000 HIV+ people in the USA, which represents about 30% of the total who are using AIDS medicines and are getting their medication paid for. Although they help a large number of HIV+ people, the ADAPs have been on the edge of a funding crisis for several years. Waiting lists in some states have been in place for months or years, and funding limitations determine eligibility criteria, which drugs the program can pay for, and how many people it can serve. For some time, something has been happening in the USA which many people believe doesn't happen anywhere outside Africa - people are dying for want of AIDS medication.

The number of Americans living with HIV and AIDS is growing due to drugs lengthening the potential life-span of an infected person, and continuing new infections. The pool of people dependant on ADAP continues to increase, and there is no immediate likelihood that it will become smaller in the immediate future. Furthermore, the financial pressure on ADAPs continues to grow as costs of prescription drugs continue to rise - also meaning that more people are unable to pay for the drugs, and themselves become ADAP clients47. In 2004, President Bush made an additional $20 million available to purchase medicines for ADAPs in 10 states with waiting lists, but the problem is still extensive.

A person who has AIDS, if denied ARV drugs, will eventually suffer extreme bad health, followed by death. Anyone who is on an ADAP waiting list is someone who needs drugs and is unable to get them, and often goes without any treatment at all. If the person is lucky, they will get to the front of the waiting list before their health has been significantly harmed. If the person is not lucky, they will get to the front of the waiting list, and receive medicine only when enough time has passed that they have experienced significant health problems. If the person is very unfortunate, they will die before they get to the front of the list.

According to the Kaiser Family Survey, which is accepted as valid by Congress as being accurate, lengths of waiting lists fluctuate massively - there were 1,108 people on lists in 7 states in July 2002 and 813 in 9 states in November 200448. Between these dates, numbers waiting peaked at 1,629 - and they continue to go up and down49. During this time period, a total of 18 states had waiting lists at some time, and, although the $20 million from President Bush did reduce waiting times in FY2004, this initiative didn't help all states with waiting lists, and it is uncertain whether this is a one-off initiative. There are sometimes still significant waiting times, and people with AIDS shouldn't have to wait for drugs at all, once they begin to need them.

Dr. Faisal Khan, director of Virginia's HIV/AIDS/STD program commenting on West Virginia's ADAP waiting list, said,

"People are now starting to die while they're on the waiting list. It is a crisis that will continue."

It is very hard to give an exact number of people who have died whilst on ADAP waiting lists, but there continue to be more people diagnosed as having AIDS, more HIV infections, the deaths are still continuing, and the ADAP still doesn't have significantly more money. There are also no figures for deaths amongst people who failed to get on to the ADAP waiting lists, because the tightening eligibility criteria meant that they had just a few dollars too much in their paycheck to qualify for help.

Quite simply, more money is needed to buy life-saving medicines for HIV+ Americans, and Congress is reluctant to spend it. The current climate is one in which the domestic agenda, especially health-care for the poor, is not politically attractive when it comes to allocating budgetary resources. Unless this changes, people in America will continue to die, while waiting for drugs that they cannot afford.