Below is a copy of the letter that we have been delivering to U.S. Senators regarding our opposition to the Graham-Cassidy bill:

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September 18, 2017

Dear Senator,

Little Lobbyists is an organization of families with one thing in common: we all have medically complex children requiring significant medical care.  Our mission is to advocate on behalf of the millions of such children across the country to ensure that their stories are heard and their access to quality health care is protected.  We have visited your office previously and hand-delivered the stories of medically complex children in your state whose health and future would have been jeopardized by the legislation under consideration at the time.

We write again because the pending Cassidy-Graham health care bill poses similar danger to the millions of medically complex children in this country, thousands of whom live in your state.  We ask that you stand up to protect our children, and demand that Congress do the same.   

Our current health care laws can and must be improved, about this there is no debate.  However, the Cassidy-Graham bill departs from recent good faith, bipartisan efforts and attempts a massive upheaval of our health care system without input from policy experts or those who would be most affected by its provisions.  In particular, the Cassidy-Graham bill undermines three protections in current law that are vital to the health and well-being of medically complex children and their families:  

• Decreased Medicaid funding through “per capita caps” and “block grants”. Private insurance frequently does not cover home/community-based care (such as private duty nursing) and therapeutic care. Medicaid fills this gap, which allows medically complex children not only to live at home, but to thrive. Cassidy-Graham’s upheaval of Medicaid will cut billions of dollars nationally from the program relative to current law, with no guarantees that the funds must be spent on the same population. Under such funding restrictions, optional Medicaid programs, such as the Katie Beckett Medicaid waiver program created by Ronald Reagan to help families care for their medically complex children at home, will likely be among the first eliminated. In short, under Cassidy-Graham, the vital safety net that Medicaid provides our children is slowly pulled away, with families like ours left to worry constantly whether it will be there when they need it.

• Eliminating the ban on annual/lifetime limits. Many of our children accumulated millions of dollars in medical bills in their infancy before they ever left the hospital. Under the ACA, insurance companies were prohibited from kicking our children off of insurance plans when their care reached a certain dollar amount. Cassidy-Graham would allow states the ability to waive these protections. This means that parents across the nation sitting bedside in Neonatal Intensive Care Units will once again have to worry not only about whether their child will survive, but also whether the hospital stay will leave them bankrupt.

• Eliminating the ACA’s pre-existing condition protections. Medically complex children are frequently born with multiple pre-existing conditions. Protections against discrimination on the basis of these conditions give us the security that our children will not one day be denied affordable insurance because of conditions they were born with. That security is stolen by the Graham-Cassidy bill, giving states broad authority to waive these protections. This is contrary to the Republican Party’s own platform, which provides that “individuals with preexisting conditions who maintain continuous coverage should be protected from discrimination.”

We have heard politicians over the past few days tell us that the Cassidy-Graham bill will increase “flexibility” and “choice” for Americans.  That is flatly untrue for our families.  Rather, the bill’s provisions will fundamentally disrupt the safety net that our families depend on, likely leaving us only one unthinkable choice: incur debt far beyond our means, or forego medical care that will keep our children alive and able to achieve their God-given potential.

As we said at the outset, our nation’s health care laws can and must be fixed.  But it is unjust, immoral, and contrary to any reasonable meaning of “pro-life” to pass a health care law that makes it harder for medically complex children to access the care they need to survive and thrive.  Our children have done nothing wrong.  They do not lack personal responsibility; indeed, they show more strength, bravery, and resiliency in a single hospital visit than many people do in their entire lives.  They are just kids who, through no fault of their own, need a little help.  

You can help them now.  Stand with our children.  Hear their stories.  Work with us to ensure their access to health care is not diminished.  We will make ourselves available anytime of any day to discuss our concerns with you in person, and to assist in any way we can toward the goal of a health care system that works better for all Americans. 

Sincerely,

Elena Hung
Michelle Morrison
Co-Founders, Little Lobbyists

Austin Carrigg, Anna Kruck Corbin, Laura LeBrun Hatcher, Ben Zeitler
Steering Committee, Little Lobbyists