Are there really 10,000 diseases and just 500 ‘cures’?

The Fact Checker has an ongoing interest in examining the accuracy of health and public policy statistics cited by politicians. We delved into this topic repeatedly in 2015 but got sidetracked by the 2016 campaign. We welcome any suggestions from readers.

In this case, we are not trying to single out McCarthy. As regular readers know, we don’t try to play gotcha— and his spokesman, Matt Sparks, said the congressman misspoke and meant to say “500 cures and treatments.” It’s an inaccurate shorthand others have used, as well. For instance, a group called Vote For Cures says on its Twitter page: “10,000 diseases, only 500 cures.”

Let’s explore.

The Facts

This statistic is generally cited in the context of a bipartisan bill known as the 21st Century Cures Act, a package of bills which seeks speed up approval of new drugs and medical devices. Lawmakers had expected to negotiate a final deal between the House and Senate in the lame-duck session of Congress, but the unexpected election of Donald Trump as president may derail those plans. Democrats may be wary of easing regulations in the Food and Drug Administration in a Trump administration, even if the law meant more funding for the FDA and National Institutes of Health, Stat News reported.

Sparks noted that McCarthy has been especially motivated to find a solution for a fungal disease that affects his district in the central valley of California and parts of Arizona.

The House Energy and Commerce Committee has pushed the bill and especially highlighted the 10,000 diseases/500 treatments language. A group known as Faster Cures, affiliated with the Milken Institute, also pushes this line on its website: “10,000 diseases. Only 500 treatments. We have work to do.”

Margaret Anderson, the executive director of Faster Cures, said the group hired an economist to go through a data set maintained by Orphanet and counted 9,235 “orphan diseases,” meaning rare diseases that affect fewer than 6 out of 10,000 patients. (The European Union and Japan have even more restrictive definitions.) That’s how they came up with “10,000 diseases,” though she acknowledged it was not a “perfect science.”

She also pointed to a World Health Organization statement that “scientists currently estimate that over 10,000 of human diseases are known to be monogenic,” meaning involving a single gene.

Jennifer Sherman, press secretary for the House Energy and Commerce Committee, pointed to an estimate published by the University of Michigan Medical School that “there are roughly 10,000 diseases afflicting humans, and most of these diseases are considered ‘rare’ or ‘orphan’ diseases.”

There are other estimates, as well. The German government lists 30,000 diseases, of which it says 7,000 are rare, though we could not determine how that figure was calculated. Anderson noted that the 10th revision of the International Statistical Classification of Diseases and Related Health Problems (known as ICD-10) has nearly 70,000 codes, which would be an upper-bound estimate.

A more conservative approach is taken at NIH. “We generally say: Several thousand diseases affect humans of which only about 500 have any U.S. Food and Drug Administration-approved treatment,” said Cindy McConnell, a spokeswoman at NIH’s National Center for Advancing Translational Sciences (NCATS).

This brings us to the “500 cures.” As we noted, McCarthy apparently meant to say “cures and treatments.” But treatments is really only the right term. Anderson said she thinks only one disease can be cured once a person is ill: hepatitis C. (Vaccines have prevented transmission of some other diseases.) Other diseases can only be treated or managed, preferably through new drug therapy. The FDA law blog says that, as of 2015, “since 1983, FDA has approved about 552 orphan drugs.”

The policy implications of the proposed law is to try to speed up the FDA’s current rate of approval of about 40 new drugs a year.

Anderson said the organization was promoting 10,000 diseases/500 treatments because it was an easy way to explain the number of rare diseases that needs to tackled. “It underscores the work that needs to be done,” she said.

Anderson acknowledged the name of the organization, “Faster Cures,” might cause confusion about the difference between cures and treatments. “When it was created, it was aspirational,” she said.

The Pinocchio Test

Sometimes advocacy groups run into credibility problems when they hype the statistics. As long as lawmakers avoid saying “cures,” that does not seem to be the case here. The focus is really on rare diseases, but a credible case can be made that there are at least 10,000 diseases in the world, though there is likely more. And there are a bit over 500 treatments. So, as far as round numbers go, 10,000 diseases/500 treatments works as a talking point.

This does not quite rise to a Geppetto Checkmark, but neither does it merit Pinocchios, given that McCarthy’s staff acknowledges that he misspoke in his interview.

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