Deep breath. We all just survived another General Election.
For me, this past election day was tenderly unique. It was my first general election without my husband, best friend, father to our son, and life partner.
I first met my husband Michael while working in presidential politics in 1980. We belonged to a band of brothers and sisters dissatisfied with the status quo. For the next 30 years, we poured our hearts and souls into the causes and candidates we believed in… together.
In November of 2008, Michael was diagnosed with melanoma. On November 5, 2013, Election Day, he passed away.
While the talking heads and political pundits still argue away 24/7 dissecting the election results, there is this mind-boggling reality: one in three Americans face the struggle of a deadly or debilitating disease for which there is no cure. For those 100 million Americans plus– as well as for those who love them and care for them — this is a critically vital time to re-examine our country’s priorities. The federal budget will be back on the front burner with a new Congress. Funding cures that save lives deserves to be front and center.
In the last few years, I’ve learned more than I ever wanted to about cancer, melanoma, immunotherapy, clinical trials, MRIs, emergency rooms, hospitals, the state of medical research in this country. I’ve also witnessed first-hand the discovery potential in front of us –and the obstacles that might hold us back.
Along our journey, we encountered extraordinary people pouring their own hearts and souls into saving lives. The scientists, investigators, doctors and nurses: Every single one of them was doing his or her part to challenge the status quo, trying to find a cure.
We were also poignantly aware that we weren’t taking this journey alone. Every doctor’s office and hospital waiting room we sat in was overflowing with patients and caregivers and their families… just like ours. And the recurring conversation in these waiting rooms? “Stay ahead of your disease until the next drug is approved, the next cure is found.”
Are we all paying close enough attention to the state of medical research in our country?
- Fact: There are over 7,000 known diseases and only 500 cures. One in three Americans live with a deadly or debilitating disease for which there is no cure. These facts are repeated often by Margaret Anderson, Executive Director of Faster Cures, a one-of-a-kind think tank working passionately to update and improve the medical research paradigm.
- Fact: The National Institutes of Health (NIH), part of the Department of Health and Human Services, is the largest source of funding for medical research in the world. NIH invests more than $30 billion annually in funding grants to over 300,000 researchers at more than 2,500 universities and medical schools. These investments are literally the lifeblood of our researchers’ work. Pure and simple, NIH is at the forefront of medical discovery that saves lives.
And yet, we have all witnessed the made-for-TV budget shenanigans that regularly occur in Congress. What most of us don’t know is the effect these partisan shenanigans (and the subsequent NIH budget cuts) are having on the medical research itself. It’s severe. The research, the testing, and the clinical trials are all subject to delay, cuts, and total abandonment.
The lack of steady and reliable funding is taking a serious, life-affecting toll.
NIH Director Francis Collins is publicly sounding the alarm about the effect the budget cuts are having on the scientific community. Collins says the budget slowdown is “devastating a generation of young scientists.” With literally half the chance of getting their research funded by NIH, many young scientists are already leaving the field.
According to the American Society for Biochemistry and Molecular Biology, the current Ryan budget passed by the House “turns back the clock on scientific research.” It proposes to cut NIH’s funding by 1/3 by the year 2024. One third?
Funding cures that save lives is not a partisan issue. I’m pretty sure that just as many Republicans die from melanoma as Democrats do. Our scientists have work to do, but they need to know that steady reliable funding will be there for them.
We have work to do, too. The grassroots political organizer in me sees 100 Senators and 435 Representatives responsible for casting votes on NIH’s ability or inability to invest in cures. We need to know where each and every one of these 535 elected officials stand, and we need to hold them accountable through the political process.
We can do this. My Michael, my son, and your mothers, fathers, sisters, brothers, husbands, wives, children and grandchildren are counting on us.