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Multiple Myeloma Survival in India by Priya Menon and Gary Petersen

7/29/2013

India has 1.24 billion people, or a population that is nearly 4 times greater than the USA. The USA has nearly 22,000 newly diagnosed patients with multiple myeloma, and the best information I could find is that each year 16,000 are newly diagnosed in India. This would indicate that the incidence rate in India is much lower than that in the US. I have not found a good explanation for this significant difference. Difference in diet, life expectancy, rural vs. urban population, industrialization, use of chemicals and pesticides, under-reporting, genetics, all could have an impact; however it would be great to know why people from India are 5 to 6 times less likely to be diagnosed with multiple myeloma.

Priya lives in India and provided the following outline of how their health care system provides services to myeloma patients in India:

Even though India is the largest generic medicine exporter, healthcare policies of India fall short of saving the needy. Recent years have seen some progress with regard to publicly funded care in India, but this is in its nascent stages. This could be the reason why spending for health is one of the leading causes of poverty in India with over 63 million individuals pushed to shell out their last earnings by healthcare expenditures. India’s urbane population has gradually begun to opt for health insurance which until now had existed only as part of basic life insurance policies or as part of overall benefit package of employees.

In order to understand the scope of myeloma treatment in India, I had connected up with a few hospitals and oncologists here. What I came to understand is that treatments offered for myeloma is good but there are drugs that are not yet available here and tests like FISH that are not available at all treatment centers. However, clinical trials are not very common and participation is less. Moreover, the money involved, from an Indian perspective, continue to be very high. You can read one of the conversations I had with Dr. Lalit Kumar from All India Institute of Medical Science (AIIMS) which is funded by the central government. Dr. Kumar provides an overview of myeloma treatment in India and the costs involved.

Quoting Dr. Kumar:

In a government hospital like AIIMS, (funding by central govt) the cost of transplant comes to less than 3 lacs rupees (approx. 6000 US $). Private hospital charges approx. 8 lacs (approx. 16000 US $). Thalidomide would cost 3000 INR per month; Lenalidomide is about 15000 INR per month and bortezomib 20,000 INR per month. Zoledronic acid (injections) costs about 1500 INR per month.

So, for a person on Lenalidomide + dexa and Zoledronic acid cost would come about 20,000.00 INR (approx. 370 US $) per month.

CLICK HERE to read Dr. Lalit Kumar’s interview. (http://trialx.com/curetalk/2013/03/myeloma-in-india-curetalk-in-conversation-with-dr-lalit-kumar-professor-of-medical-oncology-all-india-institute-of-medical-sciences-aiims-delhi-india/)

Given below is a list of hospitals which offer some of the best treatments for myeloma patients in India:

-       Post Graduate Institute of Medical Research, Chandigarh

- AII India Institute of Medical Sciences, New Delhi

-       Tata Memorial, Mumbai

-       CMC, Vellore

-       Manipal Hospital, Mangalore

-       Tata Medical Center, Kolkata

-       Apollo Hospital, Chennai

And for transplants, you can find a list of CIMBCR approved centers in India at the link: http://www.cibmtr.org/About/WhoWeAre/Centers/Pages/index.aspx?country=India

So it would seem that if you can get into a state subsidized hospital you can get the standard of care for low risk multiple myeloma of Rd, transplant, and one year of Rd maintenance for approximately $10,400 US. However the average family in India earns just $6100/year, and this is usually without insurance and in a pay for service system. This is care at a state subsided facility, and the cost in the private sector is greater.   For a US citizen to understand what this would mean, it would be equivalent to spending $86,000 of your own money out of pocket. However the true cost in the USA for a US citizen without insurance would be much closer to $500,000. So even though the cost of care is far less in India, it is just as painful financially to the average citizen of India.

For all of the international myeloma patients, we hope that the last few posts have provided some help with your myeloma journey. We will continue to look for ideas that will benefit all of the multiple myeloma patient population.

By Priya Menon and Gary Petersen

For more information on multiple myeloma go to the web site www.myelomasurvival.com or you can follow me on twitter at: https://twitter.com/grpetersen1

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

7/24/2013

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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
VR

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 (http://www.cancer.gov/cancertopics/factsheet/NCI/clinical-center)

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, http://ramoslink.info/TreatcancerUSA.html proves quite useful. Priya also provided links to two web sites that will help you find a Myeloma clinical trials. Those links are https://myeloma.trialx.com/ask/ and http://trialx.com/widget/

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

For more information on multiple myeloma go to the web site www.myelomasurvival.com or you can follow me on twitter at: https://twitter.com/grpetersen1

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Multiple Myeloma Findings from ASCO 2013 by Dr. Shaji Kumar of Mayo Clinic - Improve Your Life Expectancy Prognosis by Being Your Own Best Advocate

7/20/2013

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***Now that this broadcast has aired you can listen to the rebroadcast if you CLICK HERE***
Join us at the July 25th Myeloma Cure Panel Broadcast. As we have stated on this web site, becoming your own best advocate through self education is one of the key factors in providing the best multiple myeloma life expectancy prognosis. One way is to sign up and listen to the Myeloma Cure Panel broadcasts. The next one will be on July 25th, at 7:00pm EST. Dr. Shaji Kumar of Mayo Clinic will be providing his outlook on the key developments in multiple myeloma treatments and research from the 2013 meeting of ASCO (American Society of Clinical Oncology). Dr. Kumar is part of the exceptional team of doctors at the Mayo Clinic system of hospitals who deal mainly with multiple myeloma patients, and have developed a superior survival rate and life expectancy prognosis for their patients. They report a 3 year survival rate of 90%. Which means that their patients are three times more likely to survive 3 years than the average myeloma patient as reported by the National Cancer Institute.

The Cure Panel Talk Show on 25 July, 2013 @ 7pm EST

The Cure Panel Talk Show is excited to host myeloma expert Dr. Shaji K. Kumar of Mayo Clinic, Rochester on Thursday, 25 July @ 7pm ET.

Dr. Shaji K Kumar is Associate Professor of Medicine at the Mayo Clinic College of Medicine and a consultant, Mayo Clinic Division of Hematology.

Dr. Kumar is board certified in medical oncology and hematology. He is a member of the American Society of Hematology, American Society of Clinical Oncology, American Association of Clinical Research, American Society of Blood and Marrow Transplantation, American Medical Association, Association of Physicians of India, and the European Hematology Association. His laboratory focuses on development of novel drugs for treatment of myeloma and he has been published in numerous peer-reviewed journals including British Journal of Haematology, Blood, American Journal of Hematology, and Bone Marrow Transplant on this topic.

You can see more about this myeloma cure panel if you CLICK HERE, and you can sign up for the broadcast if you CLICK HERE. I look forward to hearing your questions on the broadcast. The Cure Panel broadcasts have now been viewed over 100,000 times, and the last one on Nano Technology in Cancer Treatment was viewed over 30,000 times.

To all patients and caregivers, may God Bless your Myeloma journey/ Gary Petersen editor@myelomasurvival.com

For more information on multiple myeloma go to the web site www.myelomasurvival.com or you can follow me on twitter at: https://twitter.com/grpetersen1

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Multiple Myeloma Survival - Please remember to LIVE!

7/11/2013

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Sorry friends for the absence, but I have been entirely too busy living, and have not been thinking much about Multiple Myeloma or this web site. This has raised a question in my mind that maybe we all need to remember to just LIVE our lives and somehow leave Multiple Myeloma in the back of our minds, if at all possible. This is so easy to say but much harder to do. We recently moved to Atantic Beach, Florida and rented a place near the beach. We bike to the down town area all of the time, walk on the beach, and because we live near the beach, have been blessed with a lot of family visiting us at the beach. In the last two weeks we have had my daughter Andrea, son-in-law Sean Patrick and my adorable granddaughter Fiona, and last week we had my wife's sister Gale, her husband The Donald, and her daughter Olivia, and her new baby Izak. We had a great time, and I have found that spending time with people we truely LOVE provides such a positive experience as well as the very best memories that you can possibly have to cherish.

I will post a few of the pictures from these times as a reminder to all people with multiple myeloma that it is important to LIVE your life as best you can with those that you REALLY love. You may not have that much time to do it, so the time you have is so very important. I feel really blessed to still be able to be with those that I love.

Best Regards and may God Bless your myeloma journy/Gary Petersen

For more information on multiple myeloma go to the web site www.myelomasurvival.com or you can follow me on twitter at: https://twitter.com/grpetersen1

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Multiple Myeloma Survival in India by Priya Menon and Gary Petersen

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

Multiple Myeloma Findings from ASCO 2013 by Dr. Shaji Kumar of Mayo Clinic - Improve Your Life Expectancy Prognosis by Being Your Own Best Advocate

Multiple Myeloma Survival - Please remember to LIVE!

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