We have been awaiting good news for so long; it's tempting to revel in the discovery, to let scientific minds tend to details and call this a breakthrough. But we can't.
This is good news, to be sure, but for some generation other than mine. There are 30,000 Americans with CF, 7,000 of them adults running out of time. The median life expectancy in this country is still about 21, and CF claims a life every eight hours.
What my generation needs is a clinical answer, something to stave off the pulmonary infections that kill so many. I believe the answer is within our grasp, but the quest for it must not be overshadowed by a newfound fascination with genetics.
The practical application we will see first from this discovery will be testing for carriers of the disease. Prenatal diagnosis also will become available. There are people who think there is a solution at hand. If women carrying children with CF have abortions, then we will be on our way toward preventing this disease from recurring, they think.
We are somewhat appalled, however, at the notion that a problem would be solved if fewer of us were born. When I was diagnosed, doctors told my parents I wouldn't live to be 11. Now I'm 20. Many of us are fighting to beat the odds and don't think much of calling prenatal diagnosis an answer.
There is a looming danger here. Soon there will be substantial economic
pressure on women carrying children with CF to have abortions. CF is a costly disease to attempt to treat. Patients spend staggering amounts of money on antibiotics, physical therapy and hospitalization. My annual medical bills dwarf what my education at Harvard will cost, and my parents and I wage a never-ending battle with insurance companies that contest many of the expenses.
It seems likely that the gene's discovery will appear to be an economic answer to some. But the complexity of life with cystic fibrosis can't be worked into an equation. Finances must be kept apart from this issue.
Already the word cure has appeared in the press, but this is wrong. You can't cure a genetic disease. It's a control we're seeking, and any control is likely to be decades away.
Use of the word treatment in connection with this discovery also has been inaccurate. Despite the current hype, geneticists say they can hardly imagine the discovery affecting patients for some time. After all, scientists have had their hands on the gene for sickle-cell anemia for years, and it has made little difference in the lives of patients. I am told that the idea that this discovery will yield treatment or gene replacement is akin to science fiction.
Lives are at stake, and they must come before scientific exploration. We are still rooting for the team trying to develop a more sophisticated antibiotic or a way of thinning out the secretions that block our lungs. Giving a patient six more months of life is worth far more than the assembly of a genetic map.
People have said the discovery completes a puzzle. That is wonderful, but means nothing to those struggling to live through today. The people suffering the greatest injustice by this commotion are probably least aware of it - world news doesn't matter much in most hospital rooms.
We have crossed an important threshold, but that's all it is. This is not a time for speculation. At best, we can hope it will be an opportunity for the medical community and the public to reflect upon the current state of treatment for the disease.
Nellie and I used to sit around in the hospital talking about the future. We always concluded that the picture looked grim and that the best strategy was not to think, just to do. Today, I've outlived almost all my hospital friends from 10 years ago.
So when last week's news arrived, I called my 13-year-old sister Susan, who also has the disease. She gasped when I told her, then asked what it meant.
I had no speech prepared for my sister, nothing such as what I had told Nellie. Actually, Susan, you and I are still waiting.
