Huntington’s disease is a progressive, terminal neurological illness that causes mental and physical deterioration over a period of 10 to 20 years, usually beginning in a person’s 30s or 40s. The gene is dominant and thus does not skip generations. Having the gene means I will get the disease. There is no treatment or cure, not even anything experimental. There’s no way to stop its onset. I just turned 40.
One of the biggest arguments for genetic testing, even when there isn’t any cure or treatment to offer the patient, is financial planning. If you know that you’re probably going to be disabled and unable to work before reaching 50, you can plan for it. if you know you’ll likely spend several years in a nursing home before you die, you can prepare. But there’s a hitch: this sort of financial planning is almost impossible, except for the very wealthy.
I fit into a unique niche. Those of us now testing positive for Huntington’s are the first to know for sure about future risks. Before testing, there was always hope. Somewhere down the road, there’ll be hope again in the form of a cure-or a choice of treatments. However, even armed with knowledge that one has this gene, how can a person plan ahead financially for a devastating illness in this bleak antiworker economy? Government and big business tell us that the economy continues to improve. But many in the middle and lower classes aren’t any better off. What this means to those of us who’ve tested positive for Huntington’s is that we slog along at jobs we don’t love but can’t leave. We are dependent on employer-provided health, disability and life insurance. We want to get in as many productive years as possible. We can’t return to school to train for a new career because we don’t have time. For us, there is no future.
We pray that there won’t be a gap in our employment without a paycheck and insurance. Many businesses are converting to long-term temporary employment (sometimes as long as two years) because it means not paying benefits or severance pay. Many of us who have the Huntington’s gene don’t have savings or investments. People at risk are offered gene tests, and few can resist the lure of knowing the future. But when the results are positive, those who are affected are on their own. There is no more research help. I knew I had to make financial plans for my family.
In September 1991, I was 36 and working as a legal assistant for a two-attorney law office–a successful father-and-son operation. I had a chance at a higher-paying job in the legal department of an insurance company. The man who ran my firm was in his 60s and had no plans to retire. But when I asked, I was told that the firm would probably cease to exist without him if he became disabled or died. I needed to provide my family with health insurance for the first time. Up to that point, my husband, a Presbyterian minister, had provided us with medical benefits. He suffered from depression and changed jobs frequently. He was on the verge of another major breakdown. I knew it was now up to me to make sure we were covered.
The insurance company offered a higher salary, excellent benefits and stability. But one year and 9 months after being hired, I was laid off along with others in the department. Despite my extremely diligent efforts at finding work, I was unemployed for the next nine months. My benefits ($305 per week) ran out after six months. I was paying $500 a month to my former employer to continue health-insurance coverage for my family.
I finally found a job at another law firm. It lasted seven months before I was fired. I knew I’d done an excellent job. My employer’s only complaint was that I couldn’t keep up with the workload of the two young attorneys I was assigned to. The attorneys generated too much work for one person-50 percent of their assignments were due the same or next day. But the firm saw it as a personnel problem and let me go. I was shocked. I was also frightened that I was turning into my father, who couldn’t hold onto a job after the age of 43 because of his illness. A long talk with my doctor convinced me that the disease wasn’t setting in yet. I’d simply been the victim of a ruthless employer.
So I was out of work again for the second time in 18 months. I was ready to shoot every last perky staffer at the unemployment office who told me losing my job was a new beginning and anything was possible. I felt completely alone and out of place at the unemployment office’s happy workshops.
This time my unemployment benefits would run out after three months. I didn’t have the luxury to spend another nine months looking for a legal-assistant position making $33,000 a year, which was my salary at my last two jobs. I needed to act immediately. Because I can type 65 words a minute, I began looking for a secretarial or administrative-assistant position. I knew I would be lucky to make anything over $20,000. I didn’t care, I needed that health insurance.
One week before my benefits ran out, I found a new job as a secretary with a national organization of neurologists. The medical benefits are excellent, but I’m earning only $19,200 a year, hardly enough to live on. My now ex-husband lost his job as a pastor and cannot be depended on for financial assistance. The’ only reason I’m afloat is that my mother is helping out. She went to work to support our family when my father could no longer hold a job. Now 70, she still works for the same company.
Going through predictive testing was supposed to help me gain control of my life, and I’m not sorry I had the test. I am thankful for the knowledge that I have the gene, even if I can’t do anything medically about it. But I just wish today’s economy would let me do something about it financially.
