Tuberculosis kills more people worldwide than malaria and HIV combined, yet the funding for TB treatment and prevention is a fraction of that for the two more high profile diseases.
According to the CDC, we have up to 13M people in the U.S. with latent TB infections. In 2017, we had 27 people per million with active TB, some of those cases drug resistant and very hard to treat.
In one of those terribly difficult conundrums over how to allocate health care dollars, we’re spending a lot of money on very expensive treatments for rare diseases that afflict a vanishingly small number of people — money that could go to preventing and treating diseases that kill millions.
“The Food and Drug Administration is set to approve a second gene treatment for infants with spinal muscular atrophy that will cost $1.5 million to $5 million – it will be the costliest drug on the planet.
It’s only the second drug on the market for the rare disease after a gene treatment was first introduced in 2016, as our Post colleague Christopher Rowland reports. Biogen, the drugmaker behind the initial treatment, had already drawn criticism for the price tag of the drug Spinraza, which costs $750,000 for the first year and $375,000 for each subsequent year.
But the new drug is set to kick off a “new era of debates over cost and value as gene therapies are developed for growing numbers of rare diseases” and it has already set off a clash between the manufacturer of the new drug, Novartis, and Biogen. And the clash has already produced what independent communication experts describe as a coordinated effort featuring “op-ed columns by former Cabinet secretaries warning about the safety of the Novartis therapy.”
Clearly if you have a family member with a rare disease, no amount of money is too much in the attempt to save your loved one’s life.
Clearly if you’re a funder, or a health care policy maker, or a responsible government leader, you have the health of the total population in mind.
Are they mutually exclusive, increasing funding for common and longstanding diseases like TB v. finding new gene therapies for orphan diseases? We’re doing both now, without adequately funding either. I think they are, to a degree, mutually exclusive — simply because health care resources are limited.
With a dysfunctional government in Washington, we’re not even having a serious conversation about health care priorities, or making decisions that reflect a consensus of “we the people”.
I don’t know how I’d work my way through the decision of how to allocate funding, although I lean toward eradicating large scale diseases like TB rather than pushing costly drugs to treat terrible illnesses that affect only a few people. But maybe that’s because right now neither I nor my loved ones are so afflicted.