For years, Loretta had suffered through on and off bouts with both bronchitis and pneumonia. In May of 2011, Loretta had a chest x-ray which had shown a questionable area in her lungs. This led her to consult with a pulmonary physician.
It would be that very same day that would change everything.
After taking a walking test in the hallway outside the doctor’s office, the oximeter recorded an 81% blood oxygen saturation level. (An oximeter shows the patient the level of oxygen that is in their blood. As a benchmark, normal blood oxygen saturation levels (SpO2) is between 94% to 99%.)
Since that day, Loretta has been on oxygen ever since. But that wasn’t the end of her story.
Nearly twenty days after first learning Loretta needed oxygen, her first CT scan was taken. It was then that she was diagnosed with Idiopathic Pulmonary Fibrosis (IPF).
What Is Idiopathic Pulmonary Fibrosis (IPF)?
Idiopathic Pulmonary Fibrosis is a rare disease with no known cause that affects the flow of oxygen through the bloodstream.
This is a result of tissue deep in the lungs, over time, becoming stiff, thick, or scarred. As the lung tissue increasingly thickens, the lungs can’t effectively move oxygen into the bloodstream.
In the end, the brain and other organs are therefore unable to get the oxygen they need to function properly.
How Many People Are Affected By IPF?
According to pulmonaryfibrosis.org, Idiopathic Pulmonary Fibrosis, in citing a recent study, affects 1 out of every 200 adults over the age of 65 in the United States. With this, approximately 50,000 new cases are diagnosed each year.
Is There A Cure For Idiopathic Pulmonary Fibrosis?
There is no cure for IPF.
The progression of IPF can vary from patient to patient resulting in fibrosis (the thickening and scarring of connective tissue) either happening quickly, processing slower, or remaining the same for years at a time.
Yet sadly for many, life expectancy after diagnosis can be as short as 3-5 years.
Can IPF Be Treated?
At the time of diagnosis in June of 2011, there were no medicines or treatments for Idiopathic Pulmonary Fibrosis.
For those initial few years after diagnosis, Loretta maintained a consistent schedule of CT scans to best monitor the progress of the disease.
By the summer of 2015, Loretta began seeing a new pulmonary physician who informed her of a recent breakthrough in treating IPF. This new approved prescription medication had shown positive results in slowing the progression of the disease. With this, Loretta’s prescription, which was to be administered orally, called for 60 capsules per month at a cost of nearly $9,500.
That’s $9,500 each month.
Unfortunately for Loretta, her prescription plan only covered a portion of that cost which adds up to nearly $115,000 annually.
But for a representative of her pharmacy, who called that same July of 2015 to notify her that she qualified for assistance from PSI, the prognosis would be very different today.
“If PSI is unable to supplement my prescription, I would no longer be able to receive the medicine because of the extreme cost.” Loretta told us in a recent letter of support for the work Patient Services Inc., is doing on behalf of patients with rare diseases.
Has Treatment Helped Loretta?
A little over two years after first going on this breakthrough medication for Loretta’s Idiopathic Pulmonary Fibrosis, her doctor ordered another CT scan as well as a 6-mile walk conducted without oxygen and breathing test.
Upon a return visit to see the results, the doctor informed Loretta that he was happy with how she was doing on the medicine.
“The progression of the disease had slowed down very significantly.” Loretta says.
Loretta Is Not Alone With IPF
Also, grateful for this breakthrough medicine and the support from PSI is IPF patient Donald. In his own words, “Without your help, I would not be able to afford my medication. I now go to the doctor and I get great news. He says that the medication helps so much that I could be the poster child for it.”
Donald continues, “Without the medication, my lungs fill up and eventually I would need a new lung or die.”
Every day, we receive stories just like this from patients just like Loretta and Donald. In this, if we can say anything, we’d say you’re not alone.
Have You Been Diagnosed With Idiopathic Pulmonary Fibrosis?
If you or someone you know has been diagnosed with IPF, you can learn more about PSI and the support we offer for qualified patients here. At Patient Services, Inc. we aim to provide peace of mind to patients living with specific chronic illnesses by providing financial assistance to eligible persons.
A World Without Health Care Charities
Did you know that health care charities like Patient Services Incorporated are under threat?
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.
You can learn more about how you can help send a message to Let Charities Be Charitable by visiting our advocacy page here.