“I absolutely would not be able to afford my medications if it wasn’t for the organizations, and without them, I would not be here much longer for my family.” – Rick
Nearly 30 years ago, PSI, the nation’s first patient assistance charity, was established to help Americans battling chronic and rare diseases access life-saving health care. Since then, an entire sector of similar charities emerged to provide a temporary safety net to over half a million Americans who, through no fault of their own, are suffering from life-threatening – and expensive – conditions.
Charities like PSI have become an essential cornerstone of America’s healthcare system, providing an estimated $1 billion in financial assistance to Americans in-need. Absent these charitable donations, hundreds of thousands of Americans would be forced to turn to resource-strapped government programs – if they even qualify – for the care they need.
Which leads us back to Rick and his battle against Cystic Fibrosis.
What Is Cystic Fibrosis?
According to the Cystic Fibrosis Foundation, CF is a progressive, genetic disease that causes persistent lung infections and limits the ability to breathe over time.
In people with CF, a defective gene causes a thick, sticky buildup of mucus in the lungs, pancreas, and other organs. In the lungs, the mucus clogs the airways and traps bacteria leading to infections, extensive lung damage, and eventually, respiratory failure. In the pancreas, the mucus prevents the release of digestive enzymes that allow the body to break down food and absorb vital nutrients.
How Many People Are Affected By Cystic Fibrosis?
The CFF further states that more than 30,000 people are living with cystic fibrosis in America today and worldwide, more than 70,000. Interestingly enough, more than 75% of people with CF are diagnosed by the age of 2 and more than half the population with the genetic disease is age 18 or older.
The Real Story Of Life With Cystic Fibrosis
Recently, we received a letter from Rick, who himself was born with cystic fibrosis. In his letter, the father of a beautiful 6 year old daughter and husband to an amazing wife, Rick shares his story. His story, is much like many others within the rare disease community.
In his own words,
“My name is Rick, I was born in 1985 with a genetic disease called Cystic Fibrosis. It affects primarily the lungs and digestive system, causing a build up of mucus, clogging the small airways in my lungs leading to an early death. That is, if I didn’t have access to my very important medications. Without them, my lungs would quickly become more damaged then they are. Making it harder for me to breathe, keep up with my 6 year old daughter and wife of almost 11 years. I would eventually suffer and die due to the lack of oxygen caused by extensive and uncontrolled lung damage.
Thanks to medication that are currently available and more that continue to become available through the drug trial pipeline. I have been able to keep the damage caused by this disease under control, I was able to get married and start a small family and travel to places I never thought possible with CF.
In order to remain healthy and be here for my wife and daughter, I have to take a plethora of medications. A majority of the medication range from a few hundred dollars to thousands of dollars AFTER Insurance. Due to the high out of pocket cost, I am forced to find assistance through charitable organizations such as Patient Services Inc.
I absolutely would not be able to afford my medications if it wasn’t for the organizations, and without them, I would not be here much longer for my family. Due to rules placed on organizations like PSI, assistance funding is being dramatically cut. I am currently out of assistance from PSI due to these rules, I am on my last organization that assists with out of pocket costs for medications; It’s not even half way through the year and I have no idea what I am going to do after I run out of assistance.
Please help remove these rules so that everyone like me can receive the assistance that we desperately need in order to survive.”
How Did We Get To A Place Where A Letter Like This Needs To Be Written?
Recent guidance from the U.S. Department of Health and Human Services Office of Inspector General (OIG) restricts the ability of charities to communicate with pharmaceutical donors about new therapies and patient needs. This guidance has become so constraining that it is impairing charities’ ability to operate, making it difficult to develop new programs and obtain funding for existing programs that many patients rely on.
Simply put, if charities can’t step in to help chronic and rare disease patients cover the prohibitive costs of their health care, either hardworking taxpayers will have to, or people will die.
How Can You Join Rick And Take Action?
The best way you can help us is, like Rick, to tell your story. Stories are very powerful. Everybody has a story, especially a story if you have a child or a family member with a chronic illness. Your story matters and can change people’s lives. We believe that it can change people’s minds.
We need your help to continue to share your stories, and to continue to express your first amendment right. Will you join us? Take action today by clicking here.