A Husband’s Plea for Help

Below is a comment I recently received in response to an earlier post, from September 17th.  The comment comes from a man who is desperately trying to help his wife, Deborah, to gain access to and coverage for capcitabine (Xeloda.)  Deborah has exactly the same kind of cancer as I have:  Stage 4, metastatic, HER-2 positive cancer that didn’t really respond to Herceptin. 

I find this woman’s predicament heartbreaking and very disturbing, especially since I have coverage and access to the very drugs she needs, while she (living only a few kilometers away) does not. I guess I don’t understand the meaning of the word “Universal” when it is modified by the term “Health Care.”

I’m posting this story in case anyone out there can help this family in any way – ideas, programs that you might know of, clinical trials, other drugs, anything. I’ve already asked my hospital social worker if she knows of any organizations that might be of assistance.  If anyone has any suggestions, please post a comment!!

Here is the original message from George:

Congrats on getting the treatment you needed, wish I knew if it worked for you? So it will help us in the battle to get it covered for my wife.

My wife, as the story below tells, is in need of the same drugs. But I have no drug plan, nor $8000 a month. Or a house to sell.

With a new CT scan with contrast to see if it has gone into her brain, this is Nov. 10/09.Here is her story, from a caregiver’s eyes:

Oncology patient at Brampton Civic Hospital, in Ontario.  She has been diagnosed with metastases breast cancer, stage 4, inoperable with HER2 receptors. Treatment of Trastuzmab, Gemcitabine and Docetaxel, started on April 21, 2009 and ended on July 30, 2009. The last and final treatment was cancelled because this cocktail was ineffective.

Then the NFL protocol was then given and cancelled after the 2nd bout, because it made her even sicker. She was placed in the hospital with a fever and low white counts. I.e. ABS NEUTS 0.4

Primary is Dr. S. Reingold of BCH.  We spoke to the Oncologist at the clinic, who then informed her, there is another treatment. Using the drugs called, Xeloda and Tykerb, this was on Aug. 10, 2009. At this time she was informed that this treatment is not covered by ODB. She is presently on O.D.S.P. for Truncal Neuropathy (2003).

The doctor at the clinic spoke of writing a letter, for assistance in paying for this treatment, which costs about $8000 a month. I have a copy of these letters dated Oct 8/09 and Oct.15/09. On Oct 8/09 and Oct 29/09, EAP said Xeloda was not covered in combination with Tykerb, though still under review by the CED.

First of all, what more is needed than, she is Stage 4, Inoperable and last but not least WILL DIE, if she does not get this treatment! I find it very appalling that if these drugs were to be used by themselves, ODB would have no problem in their coverage. Other provinces and countries are using them in combination, why not Ontario?

I have been keeping a documented record of all tests and medications, taken and given, since chemotherapy started. Every MIR, CT scan and hospital visit I can get, that the hospital will give me. Some of the hospital reports will not be given to me, claiming doctor privacy issues. These latter ones, I deem needed in this personal file, which I am recording for her, because her memory is not what it used to be.

A little personal history:

Deborah W. had been a book-keeper for a law firm for over 10 years and became Assistant Office Manager, in two years. After leaving this position, she was again a book-keeper for a Logistic company. Taking care of their books, this consisted of 3 companies, NO small task by any means. After being inflicted with diabetic Truncal Neuropathy (2003). She was unable to go back to work because of the pain and memory loss, due to the medications. In and around Oct. 2008, she began to overcome the aliments of the Truncal Neuropathy and two near death experiences. Just to have it be replaced by Cancer (five months later) that was never detected, even though she told her doctor of the new pain under her arm, till it was too late. Now again her life has become, nothing but pain. Also, CANCER took her mother and father.

Then in March, 2009, came the real blow to everyone involved, the words, INOPERABLE CANCER, 2 to 4 years to live. But this may not happen, since the so called normal chemotherapy did not work.  She is also a loving mother of two beautiful children, her daughter Jennifer 17 years old and her son Andrew age 23 years old, and with his girlfriend Elizabeth, their son Ethan, age 18 months. All she wishes is to watch them grow up!

I have known this woman since 1978, and we were married in April 27, 1979.

All I can ask now from anyone is, how can I get these drugs approved and covered?

Regards

Georg W. (Caregiver)

Update:
We are and have been asking the EAP to help cover only the Xeloda since, the makers of Tykerb, GlaxoSmithKline has stepped up to the bat. They are giving us Tykerb for free on Humanitarian reasons. Tykerb being the more expensive of the two drugs. Roche, the makers of Xeloda, are asking for us to cover 75% of their product.

 

Here is a photo of Deborah and her grandson at Halloween, with a caption from an e-mail from George:

Ethan and Deb“I’ve learned that in putting a face behind any story, can help even the hardest heart to open up, to the feelings it was meant to have. Sorry to sound like a commerical, but I’ll do anything to save my wife’s life.” ~ George W. 
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6 Comments

Filed under Living with Breast Cancer

6 responses to “A Husband’s Plea for Help

  1. Lisa Dunn

    I was so shaken by this story. I cannot even imagine being in a situation where you need a drug, it is available, but they won’t give it to you at a reasonable price.

    I spent some time looking on Google this morning and so far all I have found is something called the Trillium Drug Program. I am not sure what it is, or what the restrictions are, but it might be an option. Also, did they ask their doctor about clinical trials with this drug combination that might cover the cost? (I am not sure how clinical trials work). I will keep looking at other websites on advanced breast cancer as they may have some helpful ideas. George and Deborah, you are in my thoughts and prayers.

    Lisa

  2. Shawna Cartwright

    Deborah and George.

    Please do not give up. There has to be a way for Deb to get the medical treatment she so desperately needs.

    I’m so shocked to learn that this can happen in Canada…Universal Health Care…what a joke.

  3. Lori

    I have been friends with Debbie and Georg for over 7 years and I have seen much of the struggles they have lived through. I have watched Debbie turn from a vibrant, attractive, full of life and laughter woman to a mere shell of herself. Her mental capacity has diminished so much she is no longer capable of administering her own medications. She depends almost completely on Georg to care for her, their household, their pets, their 17 year old daughter. Debbie can’t even pick up her grandson anymore. I have watched my friend Georg age a year a week, and now he too is suffering with health issues. Why? It’s simple, and extremely stupid: she is being denied medicine that may save her life because of political red tape. It disgusts me that one woman is allowed treatment through private insurance (and that is a wonderful thing, please don’t misunderstand) and the next is handed a death sentence because she doesn’t have $8000 a month. It is eerily close to MURDER. Please, I beg you, if you can help, please, please do.

  4. Georg W.

    First let me say thank you to Leanne for posting this for me, and the others for their comments.

    Second, I am not by any means asking for a monetary hand out!

    What my wife and I, are trying to do is inform the public, that our health care system is faulty. It needs to be looked at under a microscope. A very large public microscope.

    People are dying due to gross neglect, on the part of the people that run our health care system. When they can sit on their hands and say “we are studying the situation” or “at this time”, just to remove the blame from themselves. A system must be put in place where the doctors run the medications given, not the politicians.

    Where real health care and not just dollars and cents matters most. When a person with cancer goes to the emergency room with a fever 38C or higher, but has to wait 3 to 6 hours before seeing a doctor who is treating a hang nail.

    We want the Ontario Health Care System to wake up. Why should anyone have to go to the USA to be treated, Why should anyone die, because they do not have a Insurance Plan that can pay for it. I had a plan once, that was before I got laid off back in March.

    Canada is supposed to have the best Health Care in the world, I just don’t see it anymore, Because it wears Rose coloured glasses. Just like the horse wears blinders, those who run it can only see straight ahead. And nothing that goes on around them.

    Sorry for ranting, I needed to get that out.

    Georg W.

  5. Gwen

    I am so sorry that Georg and Deborah are meeting such roadblocks. Universal health care? It’s difficult to say it exists when so many people cannot find a doctor or nurse practitioner and, in the absence of private insurance coverage, can’t afford to pay for regular, everyday medications, far less the exorbitant costs of cancer drugs.
    I live in NB which is right at the very bottom of the heap when it comes to paying for cancer drugs. I have just heard an interview on CBC with a man being treated here for colorectal cancer with Avastin, a drug that starves a growing tumour of the blood supply it needs in order to grow and spread. Avastin costs a huge amount each month, just as Leanne’s medications do. This man is paying for the Avastin with $$ raised by friends and family. At the same time, he is using his scarce energy supplies in lobbying the Provincial Gov’t for catastrophic drug coverage.
    Our healthcare system benefits those who are lucky enough to have good jobs and good benefits. Lose your job through sickness or lay-off and you very soon come to see the other side of our healthcare system. If you don’t have healthcare benefits in the form of private insurance, you have trouble accessing physiotherapy, dental care, vision care, as well as prescribed medications. Is there a 2 tier healthcare system in Canada? You bet there is. How to remedy the current situation? It’s totally beyond me, I’m afraid. But hopefully things will change. Perhaps they would change sooner if drug companies were able to forego some of their profits. However, economics are not my forte.
    Georg and Deborah, I send you positive thoughts and my very best wishes.

  6. Elisa

    I too am well aware of the inadequacies in the system. I also have stage 4 inoperable breast cancer. After doing alot of research I realized how badly the system failed me. I was not sent for important tests like PET scans when I was initially treated in 2006. I trusted the system and it failed me because restrictions on funding that could have proven that I had tumours growing elsewhere. Recently, I visitied several US facilities that were shocked that certain tests were not performed during my initial diagnosis. I also became aware of drugs that can help me but may take years to be approved in Canada. Good for you for fighting in your wifes name. Contact the Kelly Shires breast cancer snow run they offer financial assistance for people like us that have no insurance. Also…..get to Princess Margaret and see the best of the best in cancer treatment. Push for Xeloda through the drug axcess progam they have available. I recently got special approval as I did not meet the special criteria for automatic approval. I hope this helps.

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