It seems that 90% of our US government is shut down and 90% of my cancer responded to this new clinical trial. I have more appreciation of my 90% reduction than that of the government. In the government shutdown there are, of course, many innocent and less thought about stories. We might celebrate if 90% of congress was shut down – but no, they continue to create silly chaos and get their paychecks as well; they just shut down 90% of the services to taxpayers.
While congress continues to ‘function’, “…Nearly three-quarters of NIH’s staff are now off the job as a result of the U.S. government shutdown that began on 1 October. It has also stopped processing grant applications and accepting new patients at its clinical research center in Bethesda, Maryland, just outside of Washington, D.C.” Real people count on the National Institute of Health on a daily basis.
Meet Michelle. Her cancer moves on, while the congressional ‘games’ threaten her life.
My name is Michelle and while the government is shut down, my cancer continues.
When the government closed late Monday night, the National Institutes of Health (NIH) was set to review my medical files to possibly be entered into a clinical trial for a new medication that could save my life. I’ve already been through nine months of chemotherapy, two cycles of radiation, a spinal fusion and several tumor removal surgeries and all of these procedures are taking a toll on my body. I have sarcoma which is a rare form of cancer. I need another form of treatment and the drug in the NIH trial I’m being considered for is it.
This isn’t just about me. Every week, about 200 new patients — including sick children — begin NIH clinical trials. Now we’re being told that we have to wait until the government re-opens to start our trials. The NIH has said that six different trials could have been started in the first week of the shutdown alone. About 75% of NIH’s employees — thousands of people — have been furloughed because of the shutdown. It’s not even just about us. What doctors learn from our medical trials could help thousands more in the future — even you or a loved one. Even if I’m not found eligible for the specific NIH trial I am being considered for, the only way that I will be able to acquire this drug will be to go through programs administered by the FDA or the National Cancer Institute (part of NIH) — both of which are also impacted by the shutdown.
I’m furious that Congress has chosen to shut down the government and leave so many of us behind. This is not just about the debt ceiling or national parks. For me, the shutdown means that Congress is denying me potentially life-saving treatment. I speak for everyone battling cancer when I say we don’t have time to wait.
The government shutdown is affecting so many of us across the country in a very personal way. For me, its affecting my fight for my life. I’ve had enough and it’s time to get NIH — and our country — moving again. It’s time to stop the government shutdown. Please join me in asking your member of Congress to stop the government shutdown and get back to functioning again.
In the meantime, I watch heated debate amongst women who have terminal cancer. These women debate the different postures of Obamacare vs the Affordable Care Act – they are one and the same but you would never know that from the strident tone. The neutral folks just proceed to understand how it will affect them and report back with pleasure, “My monthly rate just went down $300 a month!” $300 seems the reduction I most hear. (And if our household sees that, it will mean a lot! But the Oregon exchange is having some technical challenges.)
Maybe we can all agree that a 90% reduction of cancer is progress and that a 90% reduction in government is shoddy.