Wednesday, April 16, 2014

Susan and LLS Services: Advocacy

The Leukemia & Lymphoma Society (LLS) provides a wide range of offerings and services to blood cancer patients, their family members, caregivers and survivors.  In an effort to better educate the community about LLS, we are excited to launch a monthly informational series that will highlight our services and the ways North Texans can best utilize them.

This month we introduce the Advocacy branch of The Leukemia & Lymphoma Society and why it is so important for you to use your voice on behalf of blood cancer patients.

As the national healthcare landscape continues to change, so do the needs of blood cancer patients and their families.  The Leukemia & Lymphoma Society (LLS) is responding by increasing its presence not only on Capitol Hill but in each of the 50 states to fight for the best care and treatment options for blood cancer patients.

I recently met a gentleman named Luke Webb whose personal blood cancer battle is the reason why we are fighting so hard to change current laws.  Read as he talks about having the right treatment to his diagnosis but no way to pay for it.

"I was diagnosed with CML in September 2008 at the age of 28.  I had been married less than a year before and was shocked with the diagnosis.  I had been experiencing abdominal pain for a few days but because I only had catastrophic insurance that covers surgery and hospital stays, I was avoiding going to the emergency room.  After the third day I decided I didn't care what the cost was and went to the local ER.  After waiting for a few hours for test results, a physician's assistant came into the room, left the door open, and said 'you have cancer.'  I was floored.  I couldn't believe that at age 28 that I could have cancer.  I was admitted to the hospital where I was observed and given an oral medication called Gleevec.

After two days, I was released with a prescription for Gleevec and a follow-up appointment for two weeks.  I tried to get the prescription filled but told it was $4,800.  I thought something was wrong with the computer system at the pharmacy because I had never heard of any type of pill costing so much money.  It turns out that because I did not have prescription coverage and Gleevec is considered an oral chemotherapy, as opposed to an IV chemotherapy, that I would have to pay the full price of the drug every month.  This was the second time in two days that I was shocked.  These decisions are tough because I needed the drugs to get better but wasn't sure how I was going to pay.  Luckily, I had a family member lovingly agree to pay for my first month's supply.

During this time, someone from LLS called me to reach out and offer support in this time of need.  They discussed new treatments, offered support groups and even arranged a phone call with a CML survivor who was my age and in remission.  It was exactly what I needed to get some direction and put my life back on track.

It can be a tough and lonely road but knowing that my family, friends and LLS were there for me made all the difference in my recovery.  Without the help and knowledge of the LLS advocacy workers, I don't know how I would have ever been able to get the drugs I needed and to live a normal and healthy life."

Sadly, Luke's story is playing out in communities across the country.  People are being forced to decide between paying their mortgage and paying for the drugs they so desperately need to stay alive.  This is not ok.  Help us, help Luke and the thousands of other Americans in his shoes.  Register to become an advocate today!

During this first month between doctors visits and blood tests I was on the phone with the insurance company 20-30 hours a week, working to get them to cover not only my hospital stay (which was supposed to be covered) but also to get help with the cost of Gleevec.  There is no way I, or anyone really, can afford to pay over $57,000 per year just to stay alive.  

Eventually my blood counts stabilized and I started to feel better.  After going through all of the options, the only choice I had was to qualify for assistance through the drug manufacturer.  This meant making a very small amount of money per year in order to get the drugs for free.  It was a tough decision at the time but in the end it was necessary to survive.


Susan Allen is the Patient Access Manager of the North Texas Chapter of The Leukemia & Lymphoma Society and author of this monthly blog series.  She is a 22-year Hodgkin's lymphoma survivor, registered nurse and a Certified Nurse Navigator.

Contact Susan:
(972) 996-5905

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