Going to Miami for Transplant Doctor

[Sandy L]

Hi Everyone,

We have an appointment on Wed. with a Dr Hugo Fernandez at UMHC/Sylvester Cancer Center. Has anyone heard of him or any other doctor afflilated with this hospital?

Mike had another BMB and there were no blasts but the RBC and PLT are going down quickly. We went to Terri & Bob’s Doctor today and we just loved him. Unfortunately we are very limited as to which doctors we can see. We have Vista HMO in the tri county area of Florida. We live in Plantation, FL and we are also switching hemo doctor. We have selected Dr Melo in Planation FL. but we do not see him till the first week in Sept.
We ( and the doctors) are not sure what is happening. Mike has multiple chromosone abnormalties. The doctors are confused as to why the blast count has disappeared and yet the blood counts are dropping.

Please – if anyone can recommend a doctor in my area- I will look to see if he is on our “plan”.

Besides dealing with this disease we have to deal with Health Care Industry and all it has to offer.

Today’s doctor wants to see the slides from the Biopsy which I did not have to bring with me. He also suggested a new clinical trial – Decitabine. We called our insurance company and they do not support or pay for any clinical trials. The doctor said the drug is covered but the administrating would be out of pocket for us. We asked to get an idea what that number would be and we should know more next week.

I would appreciate any advice. Thanks everyone.

[Suzanne]

Don’t totally give up. The law in Md says that insurance companies have to cover “routine care for an illness” while a patient is on a trial dug-just not the medication. I had no trouble with them covering labs,visits, etc under that provision. Somwhere there is a list of states that have that legislation-can’t remember where Also whatever institution you are going to may be able to help you-try patient services. But if it is something you want to do see if you can’t get it covered under care you would need even if you wre not taking the drug on the trial.

[Neil]

Hi Sandy,
Most hospitals have a patient advocate that will advise patients on their rights and the accuracy of the info they are getting from insurance companies.
You might want to check this out.
There is help out there. just have to find it
Neil

[lindajo]

Don’t forget to use your state insurance department. You can probably find a toll free number in your yellow pages. They can explain what the company has to do. Many companies and policies do more than required.

I agree with Neil that a patient advocate at the center you go to is also a good resource. Good luck.

[Terri]

Hi Sandy I wish Dr Gomolin was on your plan that office is so good. You should also see if your insurance company has assigned you a Patient advocate as well. When Bob was first dx and in the hospital when the bills started going in to the insurance company I had an assigned rep that called me offering her services with insurance and finding care in our plan etc. I really did not need her as I work in insurance and very familiar with what our plan will and will not cover. But It was nice knowing there was Someone I could turn to.
Keep me posted on your visit to Sylvester Center.

[Sandy L]

Thank you all for the good advise. I will start investigating on Monday.

I have another question. We were told that Mike should be HLA typed? What does that entail? After he is typed then his sister should take the RX to the Red Cross and she should get typed as well as our children.

Would I be a candidate as well?

What does the donor have to go thru and does my insurance company pay for the donor’s medical bills?

Mike is also a veteran. Does anyone have experience with getting health care thru them?
We did ask the insurance company and they stated that if he joined a clinical trial they would not pay any bills. Suzanne if you can remember where please let me know.

Thank you to everyone that responded. This Forum has made me courageous. (To ask the hard questions and learn that there is always hope).

[Suzanne]

HLA typing is done from a blood test. His siblings are the best bet for a match-have the same parents. And have the best chance for less problems with rejection.(HVG)They told me my children would be a partial match.But they are doing bone marrow transplans using children on an experimental basis. You would have about the same chance and the same risk level of HVG as someone in the bone marrow pool. My insurance would not cover the cost for the donor. I believe I read of a few here that would pay for a limited # of HLA blood tests. I did not get a bill for my one sister being tested.
Try the trial info on this site or the http://www.clinicaltrials.gov site to see if they have that state list. I would think the veterans health benefits might help you.However it might limit where you can go. That patient services office at whatever center of excellence you go to should help you with this. I have spent what feels like years asking questions about insurance etc. and often there are answers out there through state laws that aren’t readily volunteered by the industry or gov offices when you would think they would be.

[wanda]

hi sandy i have been to the hospital but it was for parkisons dicese. my dr was named singer. i know it’s different problem but you did ask if any one was familiar with any doctors down there. i live in lauderhill and i know where plantation is. wife 79 has mds-ra and she just changed hemo dr. seems to like him and i think he’s on university. hope this helps……wanda

[Terri]

Sandy, Have you tried registering on Vista’s website to gain some info on your plan

http://www.vistahealthplan.com/

I know I use ours alot for our plan with Aetna.
It actually has our coverages outlined and gives a list of all the doctors, etc.

[Sandy L]

Hi Wanda,

Can you give me the name of the hemo on Univ Drive? Thanks

I want to thank everyone for their advice. I will try again. I have not foumd a center of excellence associated with Vista.

[Author]

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