Government Shutdown, Your Health, and American Innovation

NIH 7th floor lobby

NIH clinical trial waiting room

This is where I get my chi tea latte.

Main NIH lobby and gift shop

The main National Institutes of Health campus is home to the NIH Clinical Center, which is the largest hospital in the world completely dedicated to clinical research. About 6,000 scientists work in NIH’s Intramural Research laboratories mostly on the NIH campus in Bethesda, Maryland. More than 80% of the budget of NIH goes to innovative federal grants to over 300,000 researchers at over 2,500 American universities and research institutions. Federal grants for university professors and scientists have now been put on hold.

My blood brother George contacted me and was concerned that I would have a problem with my appointment at NIH, because I was scheduled to fly in last week during the beginning of the government shutdown and 75% of the NIH is furloughed or on forced leave. That means 18,646 employees got sent home with no pay. He was worried that I would have no nurse, no medical team, or no cancer drugs.

I went anyway. Wednesday, October 2nd, the NIH campus at Bethesda, Maryland looked like a ghost town. The lobby on the main floor was empty when I came in for my blood work. The café I get my chi tea latte non-fat vente was gated up, and the gift shop had no one working. I went up to the seventh floor lobby and it looked deserted. The waiting room for the clinical trials looked empty for quite a while. The only place on the entire campus that was open was the small second floor lunchroom. I was thankful that my furloughed nurse came in for my appointment and thankfully so did the medical staff.

Because I am enrolled in a clinical trial, I have the good fortune of being treated for the leukemia and having access to my drugs. Not so fortunate are those hundreds of patients finally entering the clinical trials, who are turned away every day at NIH during this government shutdown. In a week’s time there will be 200 sick patients turned away from clinical trials that could save their lives. About 30 of those patients are children with about one-third being children with cancer, according to an NIH spokesman.

This may help to make this point more poignant: 10,000 new patients enroll in clinical trials at NIH each year, because they are usually out of options. They are willing to take their chances with being a little white lab mouse and being exposed to experimental drugs and treatments, because standard medical treatments have failed. Now think about how they must feel being turned away.

I had dinner on Wednesday night with my cousin Sammy, who is an engineer working for NASA, and he just filed for unemployment. NASA has furloughed 17,451 employees leaving 549 working in the international space station and the Mission Control in Houston. HAVEN, a new robotic Mars probe is scheduled to launch November 18^th of this year at Kennedy Space Center. If the deadline is missed, the Earth and Mars will not orbit into the proper alignment again until 2016.

Oh, by the way, my white blood cell count has dropped from 29,000 to 19,000 – heading in the right directions. My platelets are a little lower than they should be, but not to worry at this point.

I am patiently waiting for FDA-approval of ibrutinib, which could save so many lives. I guess I will be waiting a little longer, since FDA just furloughed 45% of its 14,600 employees (6,620).

When I emailed my doctor when I arrived home to tell him about a side effect that I forgot to mention at our appointment, I received this email: