PI Perspective #14

June 1994     View PDF

Health Care Reform

Health Care Reform is one of the most critical issues facing Americans today, particularly people living with HIV and other life-threatening illnesses. If a cure were discovered tomorrow, nearly 50% of people with AIDS in this country might not be able to access it due to inadequate health care coverage. Monitoring of the various health care reform bills and pressuring Congress with citizen letters, phone calls and meetings must be maintained as the debate over reform intensifies. Delivery of health care has become a highly profitable industry with many powerful and influential players. A health care system that meets the needs of people is long overdue and possibly within our grasp, but achieving a workable system is unlikely if decisions are left to Congress, the Clinton Administration and industry lobbyists. Now is the time for concerned individuals to register their needs, comments, questions and support for substantive health care reform.

President Clinton has declared health care reform to be his “#1 policy priority.” Reform of the health care system is also a high priority for many people living with HIV and their advocates. The issue is being hotly debated across the country, and with an estimated $1 trillion to be spent on health care in 1994, many individuals, businesses and some well funded powerful special interest groups have a stake in its outcome. The health care industry has poured over $150 million into Congressional campaign coffers to influence the outcome of this debate, but in the end it is voters—people like you—who will have the final word.

While the numbers of insured versus uninsured people living with HIV are unknown, the statistics for those living with an AIDS diagnosis are not reassuring. Only 29% of people with AIDS have private insurance. Around 50% of people with AIDS who lack private insurance are covered by Medicaid, which is not accepted by many health care providers, or Medicare, which does not provide prescription coverage. Many people with AIDS have no insurance coverage either because they cannot afford it, have been denied coverage because of preexisting conditions or have been dumped by a previous insurer as a “bad risk.” Even those with insurance often find that their coverage is inadequate. Caps (upper limits on how much a company will spend on a given illness or condition) are becoming increasingly popular in the insurance business, as are exclusions of “off-label” drug use (using a drug developed for another condition to treat an HIV-related condition) and expensive procedures. Insurance companies, and not doctors or nurses, are increasingly calling the shots on what treatments are available and making decisions regarding hospital admissions and home care.

“Tony” had a standard private insurance policy. He was allowed to keep the policy when he went on disability, but maintaining the paperwork, paying deductibles, and communicating with insurance company personnel and health care providers became a full time job for his mother, herself an insurance agent. During Tony’s last hospitalization, his doctor noted that Tony was in the terminal stage of AIDS. This determination allowed Tony’s insurance company, a major national provider, to discontinue payment for a number of treatments. Tony was evicted from the hospital on insurance company orders, against the wishes of his family, doctors, and other providers. Treatments were withheld, and his care during his last days was transferred to family and friends as his insurance would not pay for 24 hour nursing. While physicians, friends and family are often effective advocates for a person unable to advocate for themselves, they are not always successful when an insurer refuses to make payment.

While some of the proposed health care reform plans seek to address the problems faced with insurance reimbursement, there is another issue illustrated by Tony’s story. The delivery of quality health care is in part dependent on hospital and physician standards and ethics. Many hospitals as well as private physicians groups will not take patients who don’t have insurance. Some Health Management Organizations have made specialist care difficult to access. Hospital administrations sometimes do not allow physicians to give palliative treatments to people in terminal stages of disease on insurance company orders. We must continue to monitor, question and advocate against this lack of ethics, not only on the part of the insurers but also on the part of hospital and HMO administrations.

Tony’s case is not unique, but it is notable because he had a good private insurance policy. His case demonstrates a sad truth about our health care system: for many, it breaks down completely exactly when it is most needed. Health care reform is, for many people, literally a life and death issue.

While a number of health care reform proposals are on the table, the Wellstone/McDermott (Single Payer) and Clinton (Managed Competition) plans are the only proposals which come close to addressing the important concerns outlined in Table 1. Other plans insufficiently address these bottom line needs. The challenge of health care reform will be to keep acceptable plans from being watered down by the Congressional committee process and to ensure that critical issues not covered in the plans are addressed. It will be essential to maintain public interest in what will be a complex and politically charged debate.

Table 1: Guidelines For Evaluating Reform Proposals
The following are some guidelines for evaluating reform proposals. Any adequate reform proposal should minimally offer:

• Universal coverage for everyone, with reasonable implementation dates (including the poor, those with pre-existing conditions, and others who are “redlined” or systematically excluded from current health plans)
• Employer mandates to pay for employee coverage
• Government guarantees of coverage for low income people
• Portability of coverage (i.e. you will not lose coverage by changing jobs)
• Proposed individual benefits fully outlined and written into the bill itself
• Coverage for long-term care
• Guarantee of affordability
• Choice of physician and specialist care
• Coverage for care expenses related to experimental treatment and coverage of “off label” treatments
• Availability of multiple therapy options to treat or prophylax against a specific disease
• Option for states to select a single-payer (Canadian-style) system

We do not have the space here to discuss all of the reform plans before Congress. More information is available from Project Inform’s policy department.

It is not too late to get involved in the health care reform debate. Your participation is vital now to counterbalance the very significant influence of powerful business interest groups which are primarily interested in protecting profits. We can’t allow profit lines to have more influence than people’s needs. If a health care bill is not passed this year, or if a weak one passes, it will be a long time before we have another chance at meaningful reform.

Many issues in health care reform dramatically affect people living with HIV/AIDS and their loved ones. More about these issues, such as the pitfalls of a managed care (or HMO) program, coverage of undocumented persons, and what is to become of the current health care “safety net” before and during reform, is available from Project Inform’s Policy Department at 415-558-8669.

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