While the following article focuses on a U.S. insurance issue, there are similar concerns in other countries. Even where there is universal health insurance, there are great concerns about access to life insurance and employment opportunity. Be sure to communicate with your local government representatives and get involved in legal discussions toward maintaining privacy of genetic information, and freedom from discrimination based on genetic information. In the U.K., the Committee on Science and Technology of the House of Commons is actively working on this issue.

Insurance Issues and Genetic Disorders were discussed by Joan Weiss and Andy Imparato at the 1997 Patient/Provider Conference. One topic was the Health Insurance Portability and Accountability Act, affectionately known as the Kasselbaum-Kennedy Bill, which was passed by Congress at the last session and technically becomes effective as of July 1, 1997. This law was designed to ensure that when a worker left a job where he or she was enrolled in a group health insurance plan, that worker could not be denied enrollment in the new employer’s group plan because of genetic information. The new group insurer cannot make eligibility conditional based on genetic information it has about the worker, and cannot use genetic information alone to demonstrate a "preexisting condition" without a specific diagnosis of the condition. The law applies to both insurance companies and employers’ self-funded plans which provide group health insurance plans.

The Bill is regarded by many as a good start; however there are important limitations which people contemplating a job change must not overlook. First, although the law has an official effective date, that date is somewhat deceiving. In reality, the law becomes effective on the annual "date of renewal" of the employer’s group health insurance policy. Obviously, the renewal date will vary from employer to employer so individuals contemplating a job change should not assume that they are automatically entitled to the Bill’s protections as of July 1st. Ideally, the worker should try to ascertain the annual renewal date of the new employer’s group policy and should make every effort to delay the job change until that date. Second, although the group insurer is prohibited from raising a single individual’s premium, it may not prevent the insurer from increasing the new employer’s group rates across the board.

Other general considerations when contemplating a job change include the following. First, if the new employer’s group health policy is offered by a large national insurer such as Blue Cross/Blue Shield or Unisys, that insurer processes billions of dollars in claims annually and may be likely to process larger or more unusual claims as a matter of course. The smaller insurers, on the other hand, are apt to more closely scrutinize individual claims. Next, if the new employer’s group plan is self-funded, the employer pays all insurance claims itself, rather than paying policy premiums to an insurer, and absorbs the actual medical expenses incurred by its employees. Thus, the employer has a direct incentive to minimize claims to keep its costs down. In many instances, the self-funded employer uses an independent plan administrator to oversee its health insurance claims process, so don’t be fooled by a name different from the employer’s.

When trying to obtain coverage for a particular procedure or test, it may be helpful to negotiate coverage with your insurer and argue that the up-front cost of what you are seeking is less than the costs likely to arise for therapy, etc., if you cannot have the test. If you are unhappy with the actions of your insurer, you can complain to your state’s Insurance Commissioner. There is one in every state and he or she oversees all insurance companies which do business within the state. Also noteworthy is the fact that the Equal Opportunity Employment Commission (EEOC) has now defined "disability" in its compliance manual to include individuals who suffer discriminatory treatment on the "basis of genetic information relating to illness, disease or other disorders." This definition has yet to be challenged in court so its protective effect remains uncertain. Similarly, Andy Imparato pointed out that the Americans with Disabilities Act (ADA) contains a little-known provision prohibiting discrimination on the basis of "association" with someone with a disability (and presumably, by EEOC definition, a genetic predisposition).

A number of proposed bills are circulating in the current Congressional session, and this topic is a hot one. The VHL Family Alliance encourages everyone to communicate with your Congressman, by letter or by telephone. Emphasize the need for more insurance protections for people with genetic disorders who already have some type of health insurance. Stress that those without should be able to obtain health insurance, not denied because of their health status or genetic predisposition. Perhaps even share a personal experience which may strike an emotional chord. Your opinions are important, and in most instances, the politician/recipient will send you a response. The more letters and calls received, the higher priority the issue gets, so please take a few minutes to express your desires and concerns to your elected officials.

A sample letter is reprinted below and may be copied or used as a model. The names, addresses and telephone numbers of the Congressmen from your area may be obtained by calling the Federal Information Center at 1-800-688-9889 and asking an Information Specialist to send you a current congressional address listing. Your local telephone book should also contain a federal government section which lists telephone numbers for your congressional districts from which to obtain current addresses. The Alliance would appreciate knowing about a call you made and/or receiving a copy of any letter you sent.

For those of you with personal questions, the Alliance of Genetic Support Groups (AGSG) has an Insurance Discrimination Specialist who will speak with individuals on Mondays and Wednesdays from 10 AM to 5:30 PM and Fridays from 9:30 AM to 1:30 PM Eastern U.S. time at 1-800-336-GENE (336-4363); E-mail: info@geneticalliance.org, http://www.geneticalliance.org. This area of the law is not only complex, but is changing every day. Please share any helpful information you receive with the AGSG so that others might benefit as well.

Dear (Congressperson):

re: Insurance Crisis

I am writing to express my deep concern about the current insurance crisis we are facing in this country. Most important is the fact that many people are simply unable to obtain health insurance. Of those who do, most are prisoners to individual policies with exorbitant premiums or to the group plans offered by their employers.

Several bills are presently pending before Congress which supplement and expand PL 104-191 (the Kasselbaum-Kennedy Bill) and I encourage you to give them your wholehearted support. Public Law 104-191 was designed to ensure that when a worker left a job where he or she was enrolled in a group health insurance plan, that worker could not be denied enrollment in the new employer’s group plan because of genetic information. However, that law does not prevent the insurance companies from raising the premiums for the whole group. It also does not address the more basic need of uninsured individuals to obtain health insurance. Some of those uninsured individuals quality for government assistance through Medicaid or SSI, but many are left without any recourse.

I am also concerned that, in light of recent genetic developments, more and more individuals are being discriminated against on the basis of genetic predisposition. Those people must be entitled to make their own personal genetic inquiries without fear of health, life, and disability insurance repercussions. (You may choose to describe a relevant personal experience at this point).

I am anxious to receive your input in this matter.

Sincerely,

(Your name and address)

As published in the VHL Family Forum 5:2, June 1997. For permission to reprint, please contact VHL Family Alliance, editor@vhl.org. Further information is available from the VHL Family Alliance, info@vhl.org.