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Showing posts with label CML. Show all posts
Showing posts with label CML. Show all posts

Wednesday, September 9, 2015

Patient Access Manager: New PCR Testing Financial Assistance



If you have chronic myeloid leukemia (CML), your doctor may order a polymerase chain reaction (PCR) blood test.  This test can find a very small number of CML cells in your blood which can help your doctor know if your CML is under control.   Here is a video that provides more information about this test and how it used: http://www.lls.org/patient-education-videos/chronic-myeloid-leukemia-cml-the-role-of-pcr-testing


The Leukemia & Lymphoma Society is pleased to announce the opening of The LLS PCR Testing Financial Assistance and Awareness Program for patients with CML. Approved patients may receive up to $1,000 of financial assistance for out-of-pocket costs directly related to PCR testing during their enrollment period. As part of the program, enrolled patients will receive support from a program facilitator, who will provide education and address barriers to testing. Acceptance into the program will be first-come first-served and based on financial eligibility.  

To be eligible for PCR Testing Financial Assistance, you must have a chronic myeloid leukemia (CML) diagnosis, be a United States citizen or permanent resident of the U.S. or Puerto Rico and have a household income that is at or below 500 percent of the U.S. federal poverty guidelines as adjusted by the Cost of Living Index (Click here to estimate).  For more information or to apply, please visit the website www.LLS.org/PCR or call 1-877-614-9242. 

Feel free to reach out to me directly if you would like more information about this exciting new initiative.

Your friend,

Seetha
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Seetha Modi is the Patient Access Manager of the North Texas Chapter of The Leukemia & Lymphoma Society and author of this monthly blog series.  She has an Masters in Public Health and has experience working with varied aspects of the healthcare industry, including hospitals, the CDC and other health-related nonprofit organizations.



Contact Seetha:


Seetha.Modi@lls.org

(972) 996-5905

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.

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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:
Susan.Allen@lls.org
(972) 996-5905

Friday, May 3, 2013

Mother's Day Profile: Britt Hemsell



Life is perfect! This was my perspective at age 34, married to the man of my dreams, enjoying our beautiful baby boy (22mo.), and praying about having another one. In February of 2004, I went in for a routine physical feeling great having just lost all the baby weight. My doctor visit went well and I was sent on my way with a clean bill of health. Yay! The next day my physician called and expressed some concern that my white count was a bit high at 25,000. It looked like I might be fighting an infection and should start on antibiotics. Little did I know, this was just the beginning of what was yet to come.

A few days later, I was back in my physician’s office getting more blood drawn for more tests. Still taking antibiotics, my white count had increased a little up to 27,000. I still felt fantastic. What could be wrong? She was determined to figure out what was going on. So, after a week worth of testing and more blood drawls, she sent a blood sample for a second opinion, along with doing a few more tests herself. Sitting in my physician’s office for the fourth time in the past 10 days was a bit unsettling. We discussed the results from my tests, all were negative. The second opinion’s results were a different story. I was told that he saw an "abnormality in some of my blood cells", mentioned the word myelodysplasia, and that he would like to see me.

I waited till 5:30p.m. that evening to call, thinking that I would hear back the next day to set an appointment in the next month or so. They called back 10 minutes later to come in that Thursday to visit with a hematologist/oncologist. They had been expecting my call. Chills ran up my spine. Never has a doctor’s office called back and scheduled an appointment so quickly. It was at this point that I realized that whatever was going on with me just might be serious and started researching. Words like myeloproliferative and pre-cancers like myelodysplastic syndromes (MDS) popped up. I don’t even know how to spell this stuff! Ok, whatever this is, surely it’s not cancer. I’m too healthy. I’m too young!

Thursday’s appointment couldn’t come quick enough. I want to know I’m ok and get back to my perfect life. The appointment proved to be anything but. It was confirmed abnormal blood cells present and a high white count. To help figure out what is really going on, a bone marrow biopsy was needed. During my biopsy I finally broke down and realized that this was serious and all really happening. I was scared. A week later it was time for the results. It was this visit, on March 19, 2004, that I learned I have a cancer called Chronic Myeloid Leukemia (CML). Diagnosis date is a date every cancer patient remembers. Thankfully my husband had come with me to share the blow to our lives. I was numb. I needed to start a new type of oral chemotherapy called Gleevec right away, as 100% of my cells tested positive for CML. Before this targeted therapy became available, it was stem cell transplantation and maximum five year prognosis. Getting pregnant was now out of the question due to the impact the chemo would have on the baby. I also needed to see a Bone Marrow Transplant specialist and get typed for a possible stem cell transplant as a backup. What??!! My perfect world had just come crashing down. My life would never be the same.

I started on 400mg Gleevec daily that evening. I am so blessed to have loving family, friends, and church that helped out, as the next three months proved to be physically and mentally challenging. Nausea, fatigue, bone and joint pain, anemia all took their turn as the chemo worked to eradicate the cancer cells from my body. Hungry for information to help make better informed decisions and learn how to adjust, I read and researched, and learned everything I could about CML. This is how I came to learn more about The Leukemia Society (LLS) and what they had to offer. They had the most up-to-date information regarding CML and treatment with Gleevec. The LLS helped fund the research that made Gleevec a reality. I was able to talk and get reassurance from another mom with CML through their First Connection Program. LLS sponsored local support groups for blood cancer patients provided me with a much needed outlet of support, understanding, and encouragement at a level that my family and friends could not provide or understand. Instead, my family and friends were able to rally and support me through the Light the Night campaign.

Fast forward nine years. I’m happy to say, "I’m still alive and thriving!" I thank God, The Leukemia & Lymphoma Society, the researchers, my oncology team, family, and all the wonderful people that helped me get through those tough times, and who continue to support me though the ups and downs of living as a survivor with CML. My now 11 year old son continues to be my biggest source of inspiration and encouragement. He has always helped me be brave since the beginning. As you can imagine, the past nine years have changed my life in profound ways. It is my hope and prayer that a cure will be found in my lifetime. I strive to give back and help others going through the shock of a cancer diagnosis. While I no longer consider my life to be perfect, it’s a new kind of perfect because of the people in it, the richer and deeper relationships, and cherishing each day as a wife, mother, and survivor.

Britt Hemsell
9 yr. CML Survivor

If you would like to take time to honor a mother, like Britt, in your life please consider making a donation to The Leukemia & Lymphoma Society this Mother's Day.

Make a donation online
and a letter of recognition of your gift will be sent to the mother you are honoring with your donation. You are also welcome to mail in a donation to: LLS, Attn: Mother's Day, 8111 LBJ Fwy., Ste 425, Dallas, TX 75251.

Thank you and Happy Mother's Day from the North Texas Chapter of The Leukemia & Lymphoma Society.