Leukemia & Lymphoma Society Celgene speech

Dear friends and family:

I gave this speech in front of about 200 Celgene employees in Phoenix, Arizona. They manufacture cancer drugs. I thought I would share it with you.

Celgene Speech

Dr. La Verne Abe Harris

Phoenix Biotechnology Company

Thursday, April 24, 2014

Hello. My name is La Verne. To my university students I am Dr. Harris. To my colleagues I am Dr. La Verne. To my children's friends I am Mama La Verne. To my 13 grandchildren I am Grandma. And to my husband Carl I am affectionately known as Honey Bear.

I am your friend, your sister, your mother, your colleague.

I have cancer and I am living on borrowed time.

Believe me, I did not want this job.

When I was diagnosed with blood cancer I told my doctor that I did not have time for this and this was a major inconvenience in my life.

I found out I had a leukemia with a chromosome deletion of 17p, which means a poor prognosis. I was told by a leukemia expert that I had two to three years to live and that unfortunately I was chemo-resistant and had less than a 1% chance of finding a bone marrow donor, because I am half Japanese and half German. Apparently there are not too many of them in the world. In other words, “La Verne, I’m so sorry.”

For some reason I was not devastated. I was sad, but calm inside. I believed that I was not going to die yet. I knew I was in for the battle of my life with the Dragon. You see, I am not afraid to die. And even more, I am not afraid to live.

I tried to get a handle on the cancer in which I had been diagnosed at the age of 57 at the height of my career as a Computer Graphics Technology professor. I tried to get my hands around possible solutions, because that’s what I did – helped technologists and engineers learn how to be creative thinkers. I was committed to find possibilities – if not for me, then for someone else who follows me.

I left my career at Purdue University to connect with blood cancer experts and educate myself. I was on a mission to save my life. At the time I was horrified to find that not much had been done in cancer research with those with 17p deletions. I knew not to read any medical research older than five to 10 years or I would already see myself as dead. Finding a clinical trial was my only hope.

I read and talked to experts about upcoming future cancer treatments – immunotherapy and monoclonal antibodies, and oral treatments. I found a clinical trial with an experimental oral cancer targeted treatment. I felt good about this one. I did not qualify for the clinical trial because of my age. Researchers wanted someone 65 or older. As a researcher, I understand demographic limitations. But it was at that moment I so wanted a fake ID card that some of my college students had!

Time was ticking away. Thank God I was so resilient, because three years after my diagnosis I qualified for two clinical trials – one at MD Anderson in Houston and one at the National Institutes of Health in Bethesda, Maryland. I selected the one in NIH because the one drug I wanted to take was being tested instead of a combination of two. I did not want the extra variable.

I have been in a clinical trial for 21 months. I am not in remission yet, but I am better off than I was when I began and I am headed in the right direction.  This drug will not cure me, but it will hold the cancer at bay until a cure hopefully can be found. I do have some side effects, such as wavy hair, brittle nails, fatigue, and cramping. But I am here. I am alive and still a force to be reckoned with. LOL.

This year the FDA will be approving this experimental drug PCI-32765 (aka ibrutinib under the branding of Imbruvica). Good news, right? This means cancer patients have access to this experimental drug, because after all, cancer treatment is cancer treatment; right?

Not so.

The way the laws are written today in Arizona and in the federal government, a cancer patient can pay $30 copay for chemotherapy administered intravenously. If a cancer patient gets cancer treatment administered orally or injected, the laws do not apply. In my particular case once the FDA approves of the drug, it will cost me $8,000 per month. I will not be able to afford it.

The drug is my lifeline. Without it the cancer progresses.

You see oral cancer treatment was not invented years ago when the laws were written. Unless the laws are revised, the insurance companies are not legally bound to cover the cancer treatment.

The Fair Access to Cancer Treatment (FACT) is just that. It legally makes insurance companies be fair to all cancer patients. What does it matter that cancer treatment is given orally, injected, or intravenously? Cancer treatment is cancer treatment.

I recently gave my testimony to the Arizona Legislature House of Representatives. I called out the lobbyist by name who spoke before me and told him that the bill needs to be passed “because my life is worth it!”

HB2078 is on the final leg of approval in Arizona, but the governor has to sign it into law. Right after this town meeting, log into the Leukemia & Lymphoma Society website LLS.org and tell the governor to sign the bill now! I will pass around the direct URL to patient advocacy.

http://advocacy.lls.org/p/dia/action3/common/public/?action_KEY=10794

The second week of May my son Rocky Harris and I will be flying to Washington DC to talk to the US Congress about Fair Access to Cancer Treatment so that the laws will also apply to those people 65 and older. The health of your company and the health of my body depend on it.

Let me end by telling you that I am here alive today because of people like you, who believe in medical research and believe in their innovations. Love and gratitude to all of you at Celgene!