Multiple Myeloma Life Expectancy Prognosis – Is Where You Live a Key Factor in Survival?  by Gary Petersen, Pat Killingsworth, and Priya Menon

Recently, I got an email from a woman in Jamaica who was beside herself because their health care system is fee- for- service.  Her mom had spent her life in public service and retired with a pension, but no health insurance    Her mother has multiple myeloma and she has exhausted her pension, savings, and the entire families’ available resources.  To quote Lisa, “We are flat broke, and she(her mom) needs more help and we can not afford further treatment.”  Her treatment had included Thalidomide, and recently, just 8 infusions of Velcade before her funds were exhausted.   Her oncologist had told her mother that there was nothing more that she could do for her mother. So if you are not rich you can not afford the drugs that we know are critical to myeloma treatment, or you have to take drugs that we know are not as effective as the new more expensive novel drugs. This is not just a problem in Jamaica, but in many countries throughout the world.  The following is the email that I had received!

Hi Gary, I have read your blog and have been following closely. My mother has MM and the family fear for her as she is now not responding to treatments. Please provide me with your telephone number and or email address as I would like to ask you some questions. Please help Gary, you are so knowledgeable, I’m depending on you.   Lisa

I live in the United States, and like many people always can find fault in our system of health care. However some 85% of the population has heath care from private insurance and those over 65 years of age are covered by Medicare.   But we still have holes in the system and the US health system is still not considered to have Universal Health Care.  The holes in our system are sometimes filled by the programs like the Chronic Disease Fund, Medicaid, and Co Pay 
assistance programs.  And as the ACA (Affordable Care Act) is implemented, the majority of the uninsured and underserved in the USA should have coverage.  In the EU countries, Canada, and Japan there is national health care,and it covers much of the cost of Myeloma Care.  This group of countries numbers 31 of the total of  196 countries in the world.  What I have found from my work on this web site is that some countries do not have employer provided insurance or a national health care system, so what do they do?  They often die too soon!  We know that without care the average life expectancy of a myeloma patient is less than one year.  The following is a map published in The Atlantic magazine which shows the countries in green that are considered to have national health care. 

Map of the Countries That Provide Universal Health Care

After we talked, she asked if she could get her mother to relatives in Jacksonville, Florida, would she be able to be treated in the US, and was there any financial assistance available for international myeloma patients.  I did the only thing that I could to see if I could help her.  I emailed some doctors in Florida and Georgia who might know if clinical trials or aid is available, and I emailed some of the most knowledgeable people in the myeloma patient and care provider community.   I emailed Dr. Asher Channan Kahn and Dr. Vivek Roy of Mayo Clinic Jacksonville, Author Pat Kiliingsworth, and Priya Menon of Cure Talk for ideas that might be helpful.  As I had hoped they all have been generous with their help and assistance.  I am often amazed by how selfless and caring many of the multiple myeloma doctors really are, and Dr. Asher Channan-Kahn and Dr. Vivek Roy of Mayo Jacksonville are on the top of my list. 

Dr. Asher Channan-Kahn wrote:

Happy to help 
Depends on her state and the need for therapy as well as prior therapies 
Asher Chanan-Khan

Dr. Vivek Roy wrote:

Happy to help. Will depend on the specifics – clinical situation, previous treatments etc

Pat Killingsworth has written a book on financial aid and he provided the following information on care for people who are uninsured and in a fee for service health care environment.  

Possible financial aid for myeloma patients worldwide

Recently my good friend, myeloma survivor Gary Petersen, asked me if I could help one of his international readers.   My fourth book, Financial Aid for Myeloma Patients and Caregivers, was published earlier this year.  But I focused on things that might help the myeloma patient community here in the United States, not in the Carribbean Islands or overseas.  Even so, I told Gary I was happy to see what I could do.

Lisa lives in Jamaica and her mother has had multiple myeloma for 5 years.  She has used Thalomid and taken some Velcade, but has exhausted her funds.  Her doctor says she is now refractory to Thalomid , and there is nothing more that she can do for her.  Lisa has a half-sister who lives in Florida, so Gary wondered if she might be eligible for a clinical trial here in the U.S.

And apparently, that’s a possibility.  So is contacting the individual drug companies to see if they can help.  I called Millennium Pharmaceutical’s VRAP (Velcade Reimbursement Assistance Program) and Celgene (Thalomid and Revlimid) Patient Support and both gave me the same answer.  Depending on the circumstances there may be help available.

Which got me thinking; there must be patients that need assistance paying for myeloma meds most everywhere.  What can they do to get help?

I soon discovered this was much too big a topic to try and cover here.  But investigating the three leads I found for Lisa’s mom might work for others from different parts of the globe, too.  Which reminds me; I should probably pass-along the specifics.

VRAP (866-835-2233) and Celgene’s Medical Info Line (888-771-0141) both have toll-free numbers.  I’m not sure if they will work in every country.  If not, Google them and dig around for a regular phone number.  I couldn’t find one, but I didn’t look very hard.

Gary’s clinical trial idea was a great one.  Apparently international patients are eligible to participate in trials here in the U.S.  And sometimes the trials even offset some travel expenses—at least while they are in the States. 

Gary and Cure Talk’s Pryia Menon will be sharing more about how international patients may be able to take advantage of all that clinical trials offered.  It sounds like a lot of work, but remember that the patient’s health—and thousands of dollars in savings—is at stake.

Clinical Trials for International Patients

Priya Menon from Cure Talk provided me with the following information about clinical trials available to international myeloma patients. 

From what I have been reading, international patients can take part in clinical trials in the US. The only thing the NIH insists on is that patients have to bear cost of travel and other expenses while on the trial. 
Even though, preference is given to patients who are US citizens and permanent residents of the USA, international patients are also considered depending on them satisfying eligibility criteria for the trials. 

Quoting from the NIH website (

1. Can cancer patients who live outside the United States participate in clinical trials at the NIH Clinical Center?

Yes. People from other countries can participate in clinical trials at the NIH Clinical Center if they meet the trial’s specific medical eligibility requirements. Due to limitations on resources and funding, however, U.S. citizens and lawful permanent residents have priority for participation in these trials.  International patients planning to travel to the United States for cancer treatment should contact the U.S. Embassy or Consulate in their home country for visa eligibility and application procedures. Participants must pay for their own travel to the United States, and they must have a place to stay while they are in the United States.

However, the National Institutes of Health in Bethesda, MD (adults and children), and for children, at St. Jude Children’s Research Hospital, in Memphis, TN have no citizenship or residency requirements for qualifying research subjects.

The article here, proves quite useful.  Priya also provided links to two web sites that will help you find a Myeloma clinical trials. Those links are  and 

So where will Lisa and her mom go from here?  The Doctor in Jamaica has forward Lisa’s mother’s history to Mayo Clinic, Jacksonville.  Lisa’s mothers renal function must be clarified because renal function often is a factor that disqualifies patients from currently available clinical trials.   I have forwarded Pat’s findings to Linda, and hope that they will be able to get assistance from one of the drug companies.  Within the next month they plan to travel to Jacksonville where Lisa has a half sister to continue their search for options to save her mother.   What started out with a request from a myeloma patient in need in Jamaica may just have become a larger investigation on how we can SAVE LIFE for the uninsured and underserved international myeloma patient community.  

Authored by Gary Petersen, Pat Killingsworth and Priya Menon

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