bmt from where?

[rahulmathur9]

My dad is suffering from RAEB 2…docs have advised for a bmt…i am currently in india….but my doc has advised me to get the bmt from somewhere outside india…….any suggestions? could u also mention the costs involved in different countries?

[jga_socal]

Rahul,
I live in the USA. The organization that handles BMT is the National Marrow Donor Program at marrow.org. There is a similar European organization at http://www.ebmt.org.

Browse marrow.org. In the patients area of the site there is a place to order lots of free publications regarding NMDP, BMTs, Transplant Center success rates, etc. It may be that they only mail this info to US residence though. Much of the material is available in various pages on marrow.org. Or, you could have it mailed to someone you know in the US who can mail it to you.
As much as Americans complain about the US health care system, this is a wake up call. For many diseases, the best prognosis frequently involves treatments at US health care facilities. But you have to be able to afford it. I’m not sure any government will be able to afford providing free bone marrow transplantation to it’s citizens. It is very expensive.

My allogeneic bmt started Jan 9, I am around 73 days out. I had the full chemo conditioning preparation. The January bill from the hospital was $291K. The hospital then settled with my health insurance company for $145K. After coming home it looks like the hospital is billing approx $10K/month for my bi-weekly visits, blood tests, bone marrow biopsies, etc. They are settling for around half of that I guess. Then there are the pharmacy costs, also paid for mostly by insurance. My guess is that if you dont have insurance but you can get your hands on $200K, and you can pay up front, then you can work out something with your chosen transplant center to get the charges dropped to match what the insurance companies pay.

I wish you good fortune in your effort to help your Dad. He is very lucky to have you as his health advocate.

Jim

[rahulmathur9]

can someone name some of the best transplant centers?

[MNladyslipper]

The University of Minnesota – Fairview – Minneapolis, Minnesota
Seattle Care Alliance – Seattle, Washington
MD Anderson Cancer Center, Houston, Texas
are all ones I have read a lot about. My husband will be having his double cord transplant at the Univ. of MN. Our insurance covers it 100%. We are very fortunate!!

[deb m]

also Dr. Alan List at The Moffitt Cancer Center in Tampa, FL is in the news a lot with his research into BMT and Stell Cells. They are having great successes there. That is where my dad had hi STC done.
deb

[jga_socal]

This is a follow up to my March 21 post.

On the way out of the hosp Tues after getting my 100 day post-transplant bone marrow biopsy (ouch), I stopped and spoke with the lady that coordinates my hosp charges and insurance coverage.
She told me things that should be of interest to people who need a stem cell transplant but have no insurance coverage. I’m talking about Scripps Green hosp in La Jolla, CA. But I suspect other transplant centers may have similar policies.
1. The hospital does work with people who are not covered by insurance. Specifically they will charge insurance rates if the patient can pay up front.
2. Scripps has a fund for cancer patients who specifically do not have resources to pay for treatment. There are private angel donors who maintain this fund. Of course, patients have to supply proof that they can not afford the treatment themselves.

I recommend that anyone in the world who lacks the financial resources for a stem cell transplant should not simply assume they are out of luck. start contacting your desired transplant centers (as listed at marrow.org) and find out what programs they have. Apply for assistance directly with each transplant center.
For those who dont qualify but can raise $150+K via a home equity loan, family, or whatever, contact the transplant centers to see if they will work with you on the rates.

[rahulmathur9]

Hi Jga_social,

Thanks for the post, my dad does not have insurance. But we can get out hands on just over $200,000. I am unsure which transplant centre to talk to though?any suggestion?

[jga_socal]

Rahul, Thank God for having money if you dont have insurance. Having one or the other is much easier than the third way, applying for grants.
The list of transplant centers is HERE . Study the list of US transplant centers and read about their programs. I was first tempted to trust only the best statistics for 1 year survival. This ranges from zero to 56%. The City of Hope in Duarte California has one of the 3 most successful programs as judged by 1 year survival. The other 2 top centers in published success rates are in Seattle and Texas. These transplant centers do a lot of transplants. They are very good. They have teams of doctors that specialize in transplants for different groups of marrow disorders.
I just had my transplant done at Scripps Green hospital in La Jolla, California. It has limited published figures for allogeneic transplants in the NMDP book. They’ve been doing autogeneic transplants for over 20 years and started doing allogeneic transplant only the last 5 years. But after studying the situation and asking lot of questions, I came to a realization. The transplant centers all share information. They are not competing businesses. They all want to succeed together. If one center is having success with a particular transplant protocol, the results are published and other centers will follow. The other thing is that many of BMT doctors train at one of the ‘rated’ transplant mills, then take their skills to smaller BMT centerers. My doctor trained at City of Hope.
So, choose some transplant centers certified by the NMDP. In the transplant center publication or online, look for the financial resource representative. Contact them to talk about your case and situation. For instance the lady I spoke to at Scripps referred to in my last post is Paula Peters. See this page: Scripps Green Hospital .
Talk to several transplant centers. Find out if they’ll work with you, where their doctors trained, what type of transplants they can perform, what is the patient/nurse ratio. If you have any relatives in the US, choose a center closest to them.
Hope this helps.

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