Treating aHUS: This Disease Has Forever Changed Me

Aug 13, 2018 | Patient Blog

“The first year of my illness cost my Insurance company 1 million. My infusion, every 14 days, costs my insurance company $28,000. Yes, that number is correct.”

With no cure, treatment was the only course of action for Elaine, who had been diagnosed with Atypical hemolytic uremic syndrome (aHUS).

This Rare disease is estimated at only 2 cases per 1,000,000 of population in the United States. More than half of those diagnosed with aHUS are children.

The condition can be life threatening. But as we just read, the cost of treatment, can be as well.

What Is Atypical Hemolytic Uremic Syndrome?

According to the National Center for Advancing Translational Sciences, Atypical hemolytic uremic syndrome (aHUS) is a disease that causes abnormal blood clots to form in small blood vessels in the kidneys. These clots can cause serious medical problems if they restrict or block blood flow, including hemolytic anemia, thrombocytopenia, and kidney failure. It can occur at any age and is often caused by a combination of environmental and genetic factors.

To more simply define what is occurring with Atypical HUS, ahusallianceaction.org writes,

“aHUS patients have symptoms of anemia (extreme tiredness) and fluid buildup as an outcome of the kidneys not working. Medical professionals use medication, therapy, surgery, and other treatments to help lessen the symptoms and effects of a disease.”

How Is Atypical Hemolytic Uremic Syndrome Diagnosed?

The Atypical HUS Foundation, which exists to provide information, insight, and resources for the aHUS community in America and the world, describe diagnosis for aHUS as,

“Most of the time, atypical HUS does not present with initial severe symptoms. The initial onset will most likely appear to be flu like, with lethargic behavior, pale color and a loss of appetite. It has been our experience that adult hospitals may often send the patient home with a flu diagnosis, while children’s hospitals may do a blood draw and conduct basic tests, such as Hemoglobin, Hematocrit, white blood cell counts, and platelet counts.”

The costs of having a rare disease doesn’t begin with treatment.

What’s Happening To Me?

In her own words, Elaine, a patient of Patient Services Inc., describes her journey to diagnosis of Atypical hemolytic uremic syndrome,

“I was 62 years old when I began to feel unwell. I had led a very active life, raising a family, working, exercising and conscious healthy eating. I did everything right!

When 2013 came along, I struggled with pain moving around my body, often a different place every day and mostly in my joints. I was also overly tired. In January of 2014, I felt as if I had a flu. I saw my doctor for a checkup and was told I was anemic and had high blood pressure. I was very surprised, but the doctor said It was probably just my age.

A week later I went to the ER in the evening because I was having difficulty breathing. The ER sent me home with the knowledge that I had a very slight elevation of my BUN and gave me Lasix to get rid of fluid which they thought was my problem. I did as they said and made an appointment with my GP in 10 days. Nine days later I went back to the ER because my doctor was unable to see me.

I was in Kidney failure and was admitted. I remember almost nothing of my first 3 days. After 30 days in the hospital, I had a Kidney biopsy and a Cath placed in my chest. I then began dialysis and plasma apheresis.”

Can Anyone Help Me?

At this point of Elaine’s journey, Atypical hemolytic uremic syndrome had become a reality. And with this, treatment varies, as each case is so uniquely different. It is during this time where Atypical HUS patients are much more likely to develop complications such as:

  • Recurrence of initial symptoms
  • Kidney failure
  • Seizures, neurological problems or other multi-organ involvement.
  • No response to supportive treatments
  • Return of atypical HUS even after a kidney transplant occurs
  • Severe hypertension (high blood pressure)

According to the NIH, there is but one FDA approved treatment for Atypical HUS patients, and as we read previously, the cost is astronomic.

When the FDA-approved treatment became an option for Elaine, she would have to wait another 2 weeks after she had been given a Meningococcal vaccine. Yet, by that time Elaine tells us, her kidneys were long gone.

It would be 22 months of dialysis before she was able to get a transplant.

Being Diagnosed With Atypical HUS Has Forever Changed Me

Elaine continues as she shares how this rare disease has forever changed her life.

“I had started a new job in 2014. I was having difficulty remembering codes that I need to enter into the computer which was symptomatic of my illness. I was not able to go back to work and still am not able to work. I now get infusion every 14 days.

I am immune deficient and have difficulty fighting illness. I tire easily and if under stress, I shake uncontrollably. This disease has forever changed my life. I have little energy to expend outside of daily living.”

Alongside Elaine and her family, we continue to hope for breakthroughs to treat and even cure her condition. A diagnosis shouldn’t mean life or death due to the enormous costs of treatment. It shouldn’t even be given a seat at the table when discussing what’s next.

But sadly, it is. And we at PSI want, if at all possible, want to be sitting right there next to you, holding your hand, and telling you that together, we can do this.

You are not alone and therefore do not need to face this alone.

“My husband is hoping to retire soon, at 68. This has been a blow to our finances, but we are extremely grateful for the financial help that PSI has generously given us.” says Elaine.

And we, Elaine, are extremely grateful to be sitting right next to you.

Have You Been Diagnosed With Atypical HUS?

If you or someone you know has been diagnosed with aHUS, 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.

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