Jan
07
Well, turns out I didn’t get to have chemo today – my blood counts are too low. This worries me, but also explains why I feel soooo tired. No matter; I will get my treatment next week instead.
But now for some good news: I recently blogged about a couple named George and Deborah Warkus who were fighting to get Deborah coverage and access to Tykerb & Xeloda – the drugs that I was on at the time. We’ve become friends through e-mails and phone calls, and I have been following their battle closely. It just never seemed acceptable that Deborah and I live only a few kilometers apart, have exactly the same type and stage of cancer, and yet I was receiving the very same drugs that she was denied.
Anyway, I’m thrilled to say that they have won their fight for government-covered access to these much-needed and crazy-expensive drugs! Below is an excerpt from Georg’s e-mail to me:
“Saw the doctor today with Deborah and he told us that the game has changed. Ontario health will… are you sitting down for this? Will COVER Tykerb and Xeloda under ODB and EAP with a special code, if the conventional chemotherapies do not work. It is a victory for all women with advanced or metastatic breast cancer whose tumours overexpress Her2. We have to wait for Jan. 5 to be sure if this is true, tomorrow is the date for it to kick in. If it is true I then have to e-mail all the thoughtful people that wanted to help pay for her treatment a thank you, we had a hard fight but we won. Finally the Government is going to cover it, as they should have in the first place.”
(I should point out that this is not the e-mail in its entirety. He also suggested a celebration, and included both the lyrics for, and a You Tube clip of, Lionel Richie’s All Night Long. That song has been in my head for the last couple of days. Party. Karamu. Fiesta. Forever… Thanks Georg.)
The determination with which Georg campaigned on behalf of Deborah – and their relentless pursuit of what I think everyone would agree is the only just outcome — has meaning for me beyond the victory of the everyman helping shape our so-called Universal Health Care into what it should be. These people have inspired me. Georg is like the Erin Brockovich of breast cancer husbands, and the lessons from their story are pretty straightforward: don’t give up, do whatever it takes, keep your eye on the prize. Rage, rage against it, whether it’s Ontario’s health care system or the cancer.
Deborah and I — and so many others like us — need to keep the lessons in mind, because our fight continues every single day. So a big hooray for Georg & Deb for stomping out injustice — now let’s show cancer the underside of our boots, shall we?
Nov
12
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:
“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.
Sep
17
I am a proud Canadian, and I defend our health care system with the kind of lunatic ferocity that cowers tea-partying town hall hecklers – and yet today at the hospital I actually turned to my husband and uttered the words “Thank God you have such great insurance.”
Blasphemy, I know.
But we went in for my treatment this morning only to find out that the targeted therapy (Lapanitib, aka Tykerb) and the chemo that must be taken in conjunction with it (Capecitabine, aka Xeloda) are not covered by OHIP. Yes, I am serious. No, I have no idea why not. This is breast cancer for god’s sake, not breast augmentation.
We were told the approval process for assisted coverage could take several days, which would mean a fourth consecutive week without any treatment whatsoever. All I could think of was how much my cancer managed to spread in the six-week period between CT scans while I was getting the clinical trial drug + Herceptin combo. No cancer-fighting agents whatsoever for four weeks?? And this squeaky-toy cough of mine worsening all the time? You could say I was a little freaked out.
We were in fact wild-eyed and confused, and the telephone calls were flying fast and furious between the drug company case managers, the hospital social worker, my husband, and his (really, incredibly helpful) insurance people. Being Canadian, I spent none of my time trying to figure out who should be blamed, sued and/or fired for this additional delay in my treatment, and all of my time trying to figure out how to fix it. While also freaking out.
Luckily, all parties seemed hell-bent on achieving the same goal – namely, getting me the treatment, stat – and as a result, the drugs are being delivered to my home tonight. The total cost to us after the 90% coverage of my husband’s excellent drug plan & the drug companies’ “compassionate coverage” plans is still a few hundred dollars a month, but this is ok compared to the several thousand a month we were facing at around 10 a.m. this morning. And I should note that even if we didn’t have an insurance plan, there are systems in place to ensure no patient is denied treatment — it just takes a few days.
Still, this experience has shaved a little smugness off my pride in our universal health care system, and has shaken my confidence that I will always have timely and free access to the treatments I need. This confidence, really, that is every Canadian child’s birthright, every Canadian immigrant’s landing-right, and should be everyone’s human right too.
So our system isn’t perfect, but I haven’t given up the faith completely: I have access to treatment today and we didn’t have to sell the house to get it. That’s an outcome I can live with. Literally.
