Excerpts from Ourselves Growing Older
REFORMING HEALTH-INSURANCE PRACTICES
Women need reform of the insurance system whether or not national reform ever happens.
Many state insurance commissioners have little power and work mostly for the benefit of the insurance industry. But this can be changed through citizen action. Several states have occasionally appointed commissioners who make sure the industry best serves the needs of its citizens. But even when the commissioner is weak, legislators can be prodded into proposing changes to benefit consumers. For example:
Community Rating Versus Experience Rating
By now all of us have heard painful accounts of people who paid out thousands of dollars in insurance premiums over the years only to have their premiums raised exorbitantly or their benefits canceled altogether the moment they used their insurance for illness. Only a few states forbid this practice. This is called "experience rating." Some states require insurance companies to spread these costs among all their subscribers, called "community rating," thus resulting in better coverage for everyone, but somewhat lower profits for the industry. (New York State is implementing such a law in 1993.)
States can require that certain basic benefits be covered in any insurance policy sold, such as prescription drugs and mental-health services. Some states, on the other hand, have allowed expensive infertility technology and organ transplants to be covered, even though this means higher premiums for everyone, yet permit policies to be sold that don’t cover basic primary care or preventive services.
For the elderly, but increasingly for everyone, drugs are frequently unaffordable, as prices continue to rise at three and four time the rate of inflation. Drugs companies’ profits are completely unregulated, triple those of the nearest most profitable industry. State legislatures can also require that drug benefits, for example, be included in insurance policies sold in their state.
Only about 15 percent of Americans are now enrolled in HMOs.50 You deserve the choice of an HMO or other prepaid plan, and some states have been slow to permit them. You can help make sure your state does allow them, and also that some of the recommended federal guidelines are followed, for example, requiring that the board of directors consist of up to one-third consumers/users. Other proposed HMO reforms might include that:
- All HMOs must be nonprofit;
- Medicare patients are welcome (at no increased cost of coverage beyond the federal rate);
- Equitable long-term care is included;
- Strong independent mechanisms are in place that are accountable to subscribers and enrollees in case of malfeasance and malpractice.
Changes under Way
Today many states are moving fast on insurance reform and health-system reform, stimulated by their own rising costs and the increasing number of underinsured citizens. States watch national-level debates and see the likelihood that state plans, once implemented, will remain in place. The same health-industry special-interest groups fighting for control of the national reform program are active at the state level.51 In Hawaii the indemnity plan is mandated as the insurance method guaranteeing universal coverage but resulting in higher rates of surgery and other invasive procedures. Oregon is now trying to set new Medicaid service priorities so as to extend coverage to more eligible people, by eliminating too-expensive procedures or those of doubtful value. New York is now one of thirteen states where experiments with managed care for Medicaid patients are under way.52 Many other states are working on old or new legislation to change health-insurance coverage or benefits, including setting up one single entity that would receive all medical funds from all sources to pay all bills.
As national health-system reform appears to move closer, prepaid plans or managed-care plans are certain to be an important feature of any state reforms. Without specific safeguards at the state level, however, patients rights and consumers’ needs might get even less attention than presently. We cannot count on national reform alone.
OUR RIGHTS AS PATIENTS*
You have the right to control what happens to your body. This includes the right of informed consent, which means that before you permit anyone in a medical or mental-health setting to do anything to you, they must first inform you fully as to:
1. What is being planned;
2. The risks and potential benefits of that treatment plan;
3. The alternative forms of treatment, including the option of no treatment at all.
For consent to be truly informed, you must also understand all that is being explained. It is not enough for a provider to simply catalog the risks and benefits in a quick or complicated manner, to do so when you are under the effects of medication, or in English if it is not your first language. You should ask as many questions as you have and wait until they are answered to your satisfaction before proceeding. You might ask for a written statement of the treatment plan in order to monitor your care or in case you choose to seek a second opinion later. Where no medial emergency exists, take as much time as you need to think about your decision. You can make a decision and later change your mind, since informed consent includes the right to refuse during as well as before any treatment. And you must agree voluntarily, without coercion or pressure applied by physician, family members, or others.
It is essential to read any consent form very carefully and to inquire about any vague or technical terms before signing, since your signature suggests-- often incorrectly—that you were informed. You may cross out, reword, or otherwise amend a prepared form before signing. Be sure to ask for a copy of any form you sign.
The laws in our country do not recognize an affirmative right to treatment, except in the case of medical emergencies seen in a hospital emergency room. If either transfer or discharge will threaten or adversely affect a patients condition, then emergency treatment must first be rendered, regardless of ability to pay.
Ask to see the patients’ bill of rights at your hospital. Many hospitals have patient advocates who will help you whenever you have questions or concerns about your rights and about your satisfactions and problems while you are in the hospital. In about a third of the states, patients have a legal right to see, obtain, or have access to their hospital records. Federally qualified HMOs must make records available. Physicians records, on the other hand, are the doctors’ property, though states vary in requiring physicians to make them available to patients. Your local branch of the American Civil Liberties Union can tell you of specific rulings in your state about all aspects of patients’ rights.
* Adapted from the Boston Women’s Health Book Collective, The New Our Bodies, Ourselves. New York: Simon & Schuster, 1992, p. 682.
WHAT ONE WOMAN CAN DO ABOUT HEALTH AND MEDICAL REFORM
If you are not in regular touch with your congressional delegation about health and medical care reform, call or write the local office of the League of Women Voters to find out who your representatives and senators are. Find out whether or not your representatives and senators have taken PAC (political action committee) money, how much, and from which of the health special interests.
If you belong to a women’s group or organization, find out if they are active in this issue and urge them to join one of the large notional coalitions of women’s organizations that have organized around health-system reform. "Health Care: We Gotta Have It," a group including the Coalition of Labor Union women (CLUW) and Church Women United (an ecumenical group), is working to bring grass-roots women’s support to health reform. The "campaign for Women’s Health," a coalition of nation women’s groups spearheaded by the Older Women’s League, is another group working to build consensus on what women'’ health benefits in any plan should be. Look at their evaluations of different proposals coming from the administration and from Congress, how they compare in benefits and costs for women and families, and what proposed structure changes and delivery systems would mean for you and your family. Get their literature and learn about women’s challenges to the reforms. If you haven’t been active on women’s health issues, this is an excellent time to join or support a national group, or at least to subscribe to national newsletters that deal exclusively with women’s health issues and that monitor federal agencies and congressional legislation, such as Network News of the National Women’s Health Network.
Long-term care proposals are growing in number, but are not currently built in to most mainstream reform proposals. These affect midlife and older women the most. Some build in the insurance principle. Many plans provide a continuum of care that allows the frail elderly to remain at home. Some emphasize home- and community-based care recognizing women’s unpaid labor caring for vulnerable family members at home. Other proposals clearly plan to exploit that labor. Many plans retain or even expand existing profit-making institutional care. Everyone needs to take a more active role to find support for families and to provide for the long-term care needs of elders.
We must question how many special interests are protected or even strengthened under the different plans, and where the money comes from to keep paying them. Consider the single-payer option (like Canada’s) and then find out who is and is not supporting it in congress, and why.
From the time I was a young child, I know how seriously flawed our health care system was. Starting with the early death of my mother from complication my brother’s birth when she was twenty-seven years old, through the neglect of my sisters deteriorating health because we couldn’t afford insurance, and as a young married adult with four children of may own, having to manage without insurance because the only provider we could afford dropped us, my family had suffered everything that could go wrong.
With the Clintons in office I felt someone might listen. So I was one of almost one million people to write to the White House on health reform. I wrote in March 1993 and every letter must have been read, because in October I was asked to testify before the Senate committee on Health Care reform. I shared my letter and the senators were very attentive. In my small way I feel I gave life to my mother and my sister, who are remembered through how I live my life today. Don’t be complacent. You don’t have to be an expert. You can be heard. [a fifty year old woman]
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