With a $90,000 price tag per month for treatment, for Morri, she would need a village to come alongside, and walk this trail with her. Like so many others within the rare disease community, without the help of health care charities, treatment would not be possible. Tragically, for some, no treatment can mean the difference between life and death.

Meet Morri, who is 47 years old. In 2011, Morri was diagnosed with paroxysmal nocturnal hemoglobinuria. When she was diagnosed, she was told it was a rare disease.

“My understanding of the disease is that my bone marrow makes plenty of red blood cells but a lot of them do not have a coating they need to keep from breaking down so fast. My hemoglobin can drop dramatically overnight when I go through a crisis.” Morri tells us in a recent letter she wrote.

Paroxysmal nocturnal hemoglobinuria

According to hopkinsmedicine.org, “Paroxysmal nocturnal hemoglobinuria (PNH) is a rare acquired, life-threatening disease of the blood. The disease is characterized by destruction of red blood cells (hemolytic anemia), blood clots (thrombosis), and impaired bone marrow function (not making enough of the three blood components). PNH affects 1-1.5 persons per million of the population and is primarily a disease of younger adults. The median age of diagnosis is 35-40 years of age, with occasional cases diagnosed in childhood or adolescence.”

What Are The Common Symptoms Of PNH?

PNH has a broad range of symptoms. For many, a correct diagnosis can take months and even years before finally being established. Common symptoms for Paroxysmal nocturnal hemoglobinuria can include:

Bruising or bleeding easily
Recurring infections and/or flu-like symptoms
Difficulty in controlling bleeding, even from very minor wounds
The appearance of small red dots on the skin that indicates bleeding under the skin
Severe headache
Shortness of breath
Fever due to infection
Blood clots (thrombosis)
Significant fatigue or weakness
Back pain
Abdominal pain crises

With 50% or less patients, one symptom can be bright red blood in the hemoglobinuria, or urine. Often times, patients say they notice their urine is also the color of dark tea. For certain, if you are reading this article and are experiencing any of these symptoms, please consult your doctor.

The OVERWHELMING Cost Of Treatment

Since diagnosis, Morri has been prescribed a drug that has proved to be effective. Treatment for Morri is an infusion every other week. Excluding the cost of the infusion center and expenses for doctor, the treatment comes with an impossible price tag. At $46,000 per each infusion, that’s over $90,000 a month.

The Power Of Health Care Charities

When charities are allowed to be charitable, mountains move, clouds part, and a ray of hope can finally be the normal forecast for many within the rare disease community. With enormous health care costs like that of Morri’s, it’s not the diagnosis in it of itself that causes such discouragement, it’s the overwhelming thought of how treatment could ever be afforded.

For Morri, having support from Patient Services Inc., has made all the difference. In her letter to us in support of our Let Charities Be Charitable campaign, Morri writes, “I am extremely grateful to PSI for everything they have done to help me with my medical cost over the past seven years. Without their help, I may not be able to get the medicine and the medical care I need.”

Who Is Patient Services Incorporated?

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.

Why Are Health Care Charities Like PSI Under Threat?

Recent guidance from the U.S. Department of Health and Human Services Office of Inspector General (OIG) restricts the ability of some charities to communicate with pharmaceutical donors about new therapies and patient needs. This guidance has become so constraining that it is impairing PSI’s 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 why health care charities like PSI are under threat as well as what you can do by visiting our action page on our website here.

If there was ever a reason as to why charities must be allowed to be charitable, Morri closed out her letter to us with this, “Without the generosity of the wonderful donors and charities like PSI many people would be in very difficult circumstances. It should not be hard for people to donate or for a legitimate charity such as PSI to ask of donations. I thank God everyday that charities such as PSI are there to help people in need.”

For Morri, and so many more, let’s make a difference. Let’s be her village by sending a message that says, #LetCharitiesBeCharitable today!