The Observer, February 1, 2008
Volume XL, Issue 15
Medicine Today: Testing for Huntington's disease is a tough choice when health insurance is on the line
After my previous column addressing the personal and ethical challenges surrounding genetic testing for Huntington's disease ("Testing for disease can change lives," Dec. 7), I received a slew of e-mails representing a number of different perspectives in the Huntington's disease community: individuals currently at risk (untested) themselves, individuals no longer at risk after choosing to undergo testing and receiving a negative result, and relatives of at-risk individuals.
As a writer, whenever your inbox fills up with responses immediately after an article is published, a certain amount of anxiety runs through your mind. Did I get something terribly wrong? Whom have I offended? The anxiety is far greater when the topic is one of significant personal importance to many people, as is the issue of testing among those touched by the threat of Huntington's disease.
My anxiety fortunately turned to amazement as, through these e-mails, I was exposed to an incredibly vibrant world of discourse about genetic testing within the Huntington's disease community that I had no idea existed. Someone had posted my article to an online forum that serves as a clearinghouse for any and all articles – too many to count – addressing Huntington's disease and as a gathering site for discussion and debate.
Present front and center in just about every e-mail I received was the issue of insurance discrimination, something I did not mention in my past column but not for lack of importance. Insurance works – or is supposed to work – by pooling risk such that all customers pay a certain amount in order to remove their financial risk. Those who turn out to be healthy subsidize those who face illness, and the insurer makes a profit on the remaining premium.
Insurers, therefore, have a strong financial incentive to have the smallest number of sick or potentially sick individuals enrolled in their plan, or at least to know about their health so that they can be underwritten into higher-risk pricing pools. This is done with physical examinations and questionnaires about family history. Now the same information, and to a greater degree of accuracy, is starting to be obtained with the use of genetic tests.
What does this mean? It means that individuals at risk for Huntington's who have decided to undergo genetic testing and indeed tested positive have immense trouble finding affordable insurance. Nearly every e-mail I received from an individual at risk who decided not to test spoke about how insurance played a huge role in the decision. Melanie, for instance, a formerly-at-risk woman in her 30s wrote, "I struggled with the moral issue of using a fake Social Security number and name for the test, but felt I had no choice and was forced to make that decision based on the insurance issue."
Many believe that in light of this, our insurance system is heading toward a potential disaster. As our testing capabilities continue to increase, more healthy individuals will know they are healthy and more sick individuals will know they are sick. The healthy may decide they do not need insurance (the economic problem known as adverse selection), leaving the sick – those who truly need insurance – to pay higher and higher premiums to effectively subsidize a pool of customers with increasing future health care costs. That is, if they can get insurance at all in the first place.
Some state and federal regulations have been passed or are advancing through legislatures to begin defining what information can and cannot be used when considering customers for insurance, but what regulations are both effective and just is by no means clear.
