The personal fight for cures

By Peter M. Grollman

As a public policy advocate for the Children's Hospital of Philadelphia, I make numerous trips to Washington, where I speak on behalf of our hospital and, most importantly, our young patients and their families. There I help advance CHOP's legislative initiatives, advocating on a number of issues and asking our government leaders to commit to the future of medical education and research.

I take this mission personally, especially in times like these, when there is such a contentious political environment. Despite our efforts and those of countless other pediatric hospital advocates, support has continued to diminish.

Let me tell you why I take this mission so personally. And why you as voters should also be demanding increased support for biomedical research funding.

My father continues his lengthy battle with Parkinson's disease, a disorder affecting his nervous system that ultimately forced him into a nursing home. He is also a survivor of both prostate and colorectal cancer. A researcher here at CHOP noted that in being able to beat both these challenges and the odds against him, he is remarkable. Those words had a profound impact on me, as I wondered if even one of these scenarios would someday be my own fate. It's personal.

My father-in-law died from amyotrophic lateral sclerosis (ALS), commonly known as Lou Gehrig's disease. Along with my wife and children, we witnessed his very slow and painful death. I'll never forget having to pick up this proud, strong man from the floor of my home. This disease affected him to a point where he could no longer hold himself up, even with a walker. My wife often wonders if this is a fate she someday will be facing.

This past summer, our family, like so many others, did the "Ice Bucket Challenge," further bonding us in support of the fight against ALS in his memory, and the memory of my sister's and brother's fathers-in-law, who also died of ALS. This, too, is personal.

The scary reality is that it's likely personal for each of you, too. We all are counting on the researchers who work tirelessly in the labs of our hospital, and others across the country, to discover the drug or treatment we, or our children, might need someday to better prevent these diseases and live long, healthy lives.

We go to Capitol Hill seeking research funding from the National Institutes of Health (NIH). This allows CHOP's researchers and others to have the critical support needed to create breakthroughs in cancer and other diseases. Research conducted in CHOP's labs has discovered cures for certain types of congenital blindness and childhood leukemia.

Such great news should invigorate our government leaders to invest even more in the NIH. Sadly, the reaction appears to be just the opposite: complacency. To date, the response to the empirical evidence in creating medical breakthroughs has been nothing short of unacceptable. According to a 2013 Congressional Research Service report, after adjusting for inflation, funding for the NIH decreased 22 percent over the past decade.

This is not only troubling. It's something we all should take personally.

Congress and the Obama administration must do more to facilitate the work of America's researchers so we all can maintain the hope needed to live our lives to the fullest, having the security of knowing that if we or our loved ones were to be faced with any of these currently incurable diseases, cures might just be within reach.

When funding for medical research is diminished, we all are impacted. We must respond. We need to move the discussion from our homes to the halls of government, where the personal interests and futures of Americans have been discussed and considered for generations.

How personal is this issue? Very.

I recently attended a speech given by Tom Brokaw, who is suffering from multiple myeloma, a blood cancer that killed my friend's father. Always inspiring, Brokaw used his personal struggle with this disease to challenge our nation to pursue the "next big thing," likening it to President John F. Kennedy's pursuit of space exploration. I believe that curing what today seems incurable should be our "next big thing."

The best way I know to accomplish that mission is to make it personal. And you can help make the fight personal by becoming an advocate for yourself and others. Call the White House and your representatives in Congress. Let them know it's personal. Share your story. Tell them how disease affects your life or the life of a loved one.

You, too, may be counting on a cure some day. That's why it's personal. For every American.