Finding Hope After Leukemia Diagnosis

Apr 11, 2018 | Patient Blog

Diagnosed With Chronic Myelogenous Leukemia: What Hope Looks Like

Every day, 23 people are diagnosed with Chronic Myelogenous Leukemia, a type of cancer that starts in certain blood-forming cells of the bone marrow. CML also accounts for roughly 15% of the newly diagnosed cases of leukemia in adults.

For many, the mere diagnosis of Chronic Myelogenous Leukemia is just the beginning of what often times, seems like an endless road of life-threatening decisions one must make to cast hope upon their future steps. The prospect alone of battling CML and the enormous cost for treatment, for many, is simply too much to bear.

How Many People Will Be Diagnosed With CML In 2018?

According to the American Cancer Society, updated statistics for Chronic Myelogenous Leukemia for 2018 reveal the following trends:

  • About 8,430 new cases will be diagnosed with CML (4,980 in men and 3,450 in women).
  • About 1,090 people will die of CML (620 men and 470 women).
  • A little over 10% of all new cases of leukemia are chronic myeloid leukemia. About 1 person in 526 will get CML in their lifetime in the United States.
  • The average age at diagnosis of CML is around 64 years. Almost half of cases are diagnosed in people 65 and older.

Treatment for CML is mainly treated by targeted therapy drugs, but also could include interferon, chemotherapy, radiation therapy, surgery, or stem cell transplant.

What’s It Like To Be Diagnosed With Chronic Myelogenous Leukemia?

Recently. We received this firsthand account from one of our (Patient Services Inc.) patients who had been diagnosed with CML and the agonizing choices they faced.

About 4 years ago, after having a yearly Physical, my doctor requested I have blood work re-done as there was a concern with one of the findings. An additional testing indicated that I had a problem with my White Blood Cell Count and I was sent to a Specialist at Lahey Clinic.  Further testing resulted in my being diagnosed with Chronic Myelogenous Leukemia.

Chronic Myelogenous Leukemia is a rare type of cancer that affects blood-forming cells in the bone marrow. Basically, the white blood cells abnormally develop and eventually take over the red blood cells in the body.

When my Doctor gave me the diagnosis he told me that, at the present time there is no cure for it but there is a medication that in many cases has stopped the further progress of the disease and has even put patients into remission where they can live normal lives.

He said the medication is expensive and is something I would need to take for the rest of my life. I asked how expensive and he said (4 years ago) $5,000. A MONTH.

I then asked him, “What if I don’t do anything?” He said, “You will probably live around 3 more years but your quality of life will deteriorate as the Cancer progresses until you succumb to the disease.” I told him I really needed to think about it and discuss the situation with my family.  I have Blue Cross blue Shield Health Insurance and I also wanted to find out if the medication would be covered under my Plan.

In talking to Blue Cross / Blue Shield they stated they would cover $2,800.00 and I would be responsible for the remainder. In discussions with my family I told them that I was not going to bankrupt my family so I could live longer.

During the follow-up visit with my Doctor, I told him, “Doctor, I guess I am going to die because there is no way I am going to bankrupt my family so I can live longer.” He asked, “Putting the financial aspect aside would you be willing to move forward?”  I said, “Of course! But how do we do that?”  He then said they would contact the Drug Manufacturer who in turn found “Patient Services, Inc.” whose help I attribute to my being able to write this letter.

You see, that medication that cost $5,000 per month 4 years ago as a “Top Tier Drug” now cost over $11,000.00 per month for a generic equivalent!

If you ever want to meet a person “living on borrowed time” just invite me to visit you. I do not know how much more time I have to live (only God knows) but I do know that the medication has worked so well that the Doctor has stated, “Ray whatever you’re doing, continue to do.  If a doctor had testing done on your blood, today, they would not know you have CML.”

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 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.

When asked how this made them feel, our CML patient, who shared their story earlier in this post stated,

“In closing I would like to say that if my Government, who is supposed to be there to protect not only me but ALL its citizens adopts rules and laws that adversely affect our well-being, then they have failed to fulfill their fiduciary responsibility and are no better than those who are trying to harm us!

This letter is being written in response to the unconstitutional attempt by our Government to prevent Charitable Organizations, such as Patient Services Inc., from the ability to ask for important information that is critical for them to make decisions that will help both donors and patients receive the assistance they need.”

What Can You Do?

First off, if you, or someone you know has been diagnosed with Chronic Myelogenous Leukemia, PSI wants you to know that you are not alone. As a matter of fact, you can learn more about what we do by visiting our patients page and read about the various programs available based on your type of insurance.

Secondly, you can take action by sharing your story and advocate on behalf of the over half a million Americans facing these life-threatening conditions today by visiting our #LetCharitiesBeCharitable action page.

Diagnosed With Chronic Myelogenous Leukemia: What Hope Looks Like

In reading this patient story again and again, we can’t help but feel hopeful. If they did nothing, the doctor gave them 3 years. Yet, the letter began with, “About 4 years ago..”

At PSI, we’re humbled to play a part in this story of hope. For stories like this and the many upon many patients we are honored to serve each and every day, this is why we exist. Simply put, you are not alone and together, as we walk this road, it’s in doing this that hope will always be cast upon those future steps.

https://www.cancer.org/cancer/chronic-myeloid-leukemia/about/statistics.html

https://www.ncbi.nlm.nih.gov/pubmed/29411417

 

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