I have always been an athlete. Running, swimming, and skiing give me mental clarity and a lot of joy. So it was shattering to get a diagnosis two months ago, at the age of 37, that meant my lungs were slowly being replaced by cysts.
Lymphangioleiomyomatosis (LAM) is a lung disease seen only in women. It affects around 1,500 in the U.S. alone, and is often initially misdiagnosed as asthma. Due to uncontrollable proliferation of smooth muscle cells, cysts develop within the lung, gradually destroying it. As breathing becomes more difficult, women with the disease go on oxygen tanks. There is no cure. Ultimately, many require lung transplants.
On March 1, when the sequester was enacted, NIH lost $1.6 billion in funding.
Treatment comes in the form of slowing the disease progression. The only tangible hope in that realm comes from National Institutes of Health-funded research using an experimental drug called rapamycin. Other treatment and coping strategies are ad hoc at best, ranging from hormonal therapies to herbs, acupuncture, and dietary changes. Traditionally, rapamycin was used to prevent organ rejection after transplantation, but through the efforts of biomedical researchers across the country and NIH facilitation, the drug was recently approved for the treatment of LAM patients to slow progression.
Now, with research funding at an all time low, the odds of continued development are not in our favor. The sequester is essentially slowly killing me and millions of patients still looking for cures.
This week my doctor, a lung disease specialist at Columbia University, marched on Washington in the Rally for Medical Research to protest the sequester-induced 5 percent budget cut to the NIH. She and busloads of scientists flooded the mall in opposition to the funding cuts to critical biomedical research that could potentially cure disease. Due to the sequester, Columbia University Medical Center is slated to lose 19 million research dollars for the fiscal year 2013; the losses will be even greater in 2014.
My doctor's research grant, which in any other fiscal year would have been awarded, is now in jeopardy of not being funded. She is poised to begin a trial that could radically alter the treatment of LAM, having identified a molecular pathway through research on mice that kills the cells that spur destructive cyst growth. While the number of people affected by LAM makes the trials necessarily too small to qualify for NIH funding directly, even the smaller, potentially transformative trials like this one will have increasing difficulty receiving funding because nongovernmental income sources will now be besieged by all manner of researchers whose NIH grants have taken hits.
Columbia University Medical Center is slated to lose 19 million research dollars for the fiscal year 2013; the losses will be even greater in 2014.
On March 1, when the sequester was enacted, NIH (the world's largest supporter of biomedical research) lost 5.3 percent of its 2013 budget, or $1.6 billion out of $31 billion. In 2014 the NIH will lose 8.2 percent -- and more will be sliced from the budget annually in years going forward. Medical research pays great dividends both in terms of jobs created and economic growth in the pharmaceutical industry. According to the federal government, every $1 of NIH funding generates $2.20 in economic growth.