Pharmaceutical companies are indeed businesses, just as doctors, hospitals, and insurance companies are businesses. Their interests don't always align with those of patients, or with each other's.
When drugs command high prices, part of that money is profit, part covers the research and development that went into developing, testing, and marketing that drug, and part goes toward the pharmaceutical company's overhead, including the hefty bill for research and development into drugs that didn't turn into successful commercial products.
With rare diseases like ours, there's a smaller potential market for each drug, i.e., less potential income for drug manufacturers. If it were entirely up to market economics, why would they work to develop a drug for MDS if they could develop one for a more common disease? In the United States, one factor working in our favor to mitigate that problem is the FDA's
Office of Orphan Products Development (OOPD). This program sponsors research on "orphan" (rare) diseases, provides grants and incentives for the development of drugs for their treatment, streamlines drug approvals, and coordinates between pharmaceutical companies, researchers, and other professional groups.
Other groups are working to our benefit too, including the National Institutes of Health's
The Office of Rare Diseases (ORD), the
National Organization for Rare Disorders (NORD), the
Rare Diseases Clinical Research Network (RDCRN) and of course the
Aplastic Anemia & MDS International Foundation (AA&MDSIF). Every chance we get, we should speak up for ourselves as individuals too.