● By Steven Hoffman
As parents, we are instinctively driven to protect our children and shield them from the dangers life can bring.
You can imagine the concern I had after I learned my son Cole would be living with hemophilia for his entire life.
My world changed forever.
Hemophilia is a condition that prevents a person’s blood from clotting normally. At five months, Cole was diagnosed with one of the worst forms called Hemophilia A-Severe, which can often cause internal bleeding issues from injury.
Since his diagnosis, we’ve tried every medication and treatment available to help give Cole as normal a childhood as possible. Today, Cole is prescribed a specific “specialty” biologic to keep his condition under control. This is a drug for which there are no generic alternatives. As a result, our medical bills are extremely expensive, totaling upwards of $70,000 a month for Cole alone.
Luckily, our family qualifies for support from the Children's Health Insurance Program (CHIP) –Pennsylvania's program to provide health insurance to uninsured children and teens who are not eligible for or enrolled in Medical Assistance. For now, Cole’s medical expenses and prescriptions are covered by CHIP completely, but the program is only valid until he reaches age 19.
For this reason, I’ve spent the better part of the last 11 years advocating for people like my son who need better access to prescription medications through affordable insurance plans. Even with health insurance safeguards enacted through the Affordable Care Act (ACA), the cost of prescriptions is skyrocketing. People like me pay for and are covered by their insurance premiums, but for patients with chronic conditions, simply having insurance isn’t enough.
The state of our nation’s health care is up in the air with a new administration in office. Now I wonder, will any of us be able to find policies we can afford in the future? And if we can afford the policy, will the coverage be enough? Will my son be able to live a normal life past the age of 20?
Lawmakers are starting to take notice of the significance of this issue, thanks in part to an October 2016 hearing in Harrisburg to discuss a Senate proposal that seeks to limit out-of-pocket costs on specialty medications like the ones my son needs to maintain his quality of life. This hearing was a positive first step in shedding light on the larger issue of affordable prescription coverage, a problem that unfortunately affects thousands of Pennsylvanians today.
I testified at this hearing on my son’s behalf, because I’ve seen firsthand how broken our insurance system can be. Similar legislation has already passed in neighboring states like Delaware. These common sense laws were met with little resistance from the insurance industry, because the benefits are so obvious. It is my hope we can duplicate those efforts here in Pennsylvania.
No one should have to choose between paying for life’s necessities and paying for their prescriptions. Cole, now an active 11-year-old, is thriving on his medication and I fear for what his life would be like without it.
We have started a new legislative session. Please join me in urging lawmakers to support legislation that provides residents with increased access to medications through more affordable insurance pricing. We must work together to find a solution for all Pennsylvanians.
Kim Hamstead is a resident of Landenberg. She has been advocating for hemophilia patients with The National Hemophilia Foundation since 2008.