Cancer causes job loss - looking for Canadians

[Merridith]

Hi everyone:

I just participated in a very interesting interview. The reporter was wanting to discuss with breast cancer patients the cost of having cancer. What is and what is not covered by provincial medical insurance.

Cancer is the only medical disease that isn't fully covered by provincial medical - the government has just come up with this plan to mitigate insurance costs by selectively covering the cost of treatment.

This puts those of us who have been recently diagnosed in an awkward position. Because this is a new political manuver, it hasn't occured to most people to purchase extended medical to cover this oversite as most Canadians STILL believe that regular provincial medical will cover all cancer costs including chemo - but this is no longer true. And the government is being careful not to advertise this fact. It isn't educating the population that private extended medical is something that Canadians should be considering to cover the gap.

So there is a bit of a vacume. Now that the government has recently changed it's coverage policy - those of us already diagnosed will never have, (or HAVE HAD the chance - if it had occured to us) to purchase insurance. Of course we are totally uninsurable now.

That leaves a great number of us in the unenviable possition of having to self-insure through our own savings accounts!

Here is another problem - employment.

Many companies are not interested in having their old employees return to work after a serious illness. What I found interesting was that among the breast cancer people that were interviewed - I heard annecdotal stories about how their employers had either quietly gotten rid of them by deskilling their jobs, refused to hire them beyond "casual" to avoid manditory benefits or documented them out of a job.

People like ourselves will not be covered under company extended health plans because there are often riders for pre-existing diseases that preclude us.

Companies are not interested in dealing with people who have a greater probability of collecting on the company insurance plan. It causes increases to the company's premiums - just like having a car accident - so of course - given a field of candidates - why take on the sick one -or even deal an old employee when a bit of manovering can make them miserable enough to conveniently quit?

Companies are not interested in investing in training a person for a job, investing in education etc if that person has a serious illness. Seriously, why would they? It's an investment risk!

I have been trying to think of a solution. I don't particularly blame the companies - because companies by their very nature need to mitigate costs & risk to remain competitive with their cohorts. They are not in the business of public health care subsidy. This is a political problem.

Right now, I don't think that the Canadian government even officially recognises this situation as a problem because none of the victims are willing to shine a light on it. Not the unemployed ones looking for work - because winning the "lable" would certainly decrease their future employability and increase their financial risk. There is far too much risk fingering previous employers. After all - previous employers hold "the quality of your work references" ransom against your silence. If you want to get a new job -and you want a decent reference - you had better keep your mouth shut and find a positive excuse as to why you left (Workplace bullying doesn't count!).

The question is - is there enough of us to deliver a significant voting block? It is the only way that the government will consider seeking solutions the problem. After all - as we all know - our Canadian politicians have a very linear and personal way of examining any political problem - what's in it for me?

One of the only solutions that I could think of is that our government offer strong encouragement for self-employment for victims of cancer and other catastrophic illness. Because right now - it's an uphill grind to get a job - and if you do get one, I'll bet that there is a significant chance that you are under-employed based on qualifications. To make up for the fact that the company is taking on both risk and expense to hire you compared to comparable candidates.

So here is the bottom line - I have this reporter's email. If you want to email her your stories on this topic - I will forward them. (I don't want to put her email out there) She will only be interested if you are Canadian - preferably from Vancouver, BC - as this is a local paper.

What are the stats? - 1 in 8 women will get breast cancer. 1 in three people will experience cancer at some time in their lives.

I have a question for you Canadians. Are there enough of us? Is it time to shine a light on this problem?

Thanks for letting me say my peice.

Merridith

[Lani]

for all those naive enough to wish for a Canadian type healthcare system it was an eye-opener.

Please keep us posted regarding any articles that ensue!

Best of luck!

[tammymarie1971]

I realize this has nothing to do with employment, but it is certainly politically motivated. Quick overview...I was first dx's in '01 30 yrs old..Really felt that the BC cancer agency was doing everything it could to cure me...Great!!! Then in '04 I had a recurrence to the liver...still I thought that they were doing their best, I was 33 and had 4 kids 10 & under, I had a liver resection only after my case was put to a board for approval...I had to have all kinds of tests to show that the only met was this 3 cm tumor in the liver and respond to 3 rounds of treatment (herceptin/taxol) and get the approval from a surgeon...Then I was approved for the surgery!I also had another 3 rounds of taxol/herceptin. (IF only I would have insisted on staying an herceptin alone for a year) Then I had another recurrence in '05 to the spine...They were not going to give me herceptin and I really felt written off...I left the BC cancer agency and found a private onc(still covered by BC med) in Vancouver, I am in Abbotsford. He put me on herceptin and zometa right away,(summer '05) along the way we added navelbine to keep tumor markers down. Well they started to rise again in October '06. I was then ready for the hormonals (I wanted to get closer to 40 yrs old first)
I have responded great to lupron shots and arimidex. Last January tumor markers were 102 and now they are 31!!!!

Here is the problem, I would like to go off vinorelbine and then eventually herceptin. I am starting to get a bit anemic and I am losing sensation in my hands and feet..I need a break and I want to see if I can maintain on hormonals alone for a bit, well my onc informed me today that if I go off vinorelbine, the BC cancer agency who I guess has ultimate say in what is what all through BC will consider this a failure of protocol and I won't be able to get back on even at a later date. Bottom line is that once you go off a herceptin combo you can never get back on herceptin with another chemo or alone, they won't even consider a maintanence of herceptin alone, even though only 16 - 20% of us will respond to herceptin alone.(I think this is a new rule/protocol called Oscar.)
So I am just ticked right off that I have to stay on vinorelbine in order not to lose herceptin forever. I don't know if this is as enraging to others as it is to me, I just don't know what to do next. I have made peace with the fact that I will have to maintain this cancer for the rest of my life and it won't always be pleasant, but this is buying me more time with my family.
I was pregnant with my youngest when dx'd and he just turned 5 on Friday..I am grateful for these last 5 years..I would like to try for another 5 and then another 5 and then ....But the BC cancer agency is sending many of us to our graves too early...I know that you can sometimes get years from having many chemo options but the women of British Columbia are being short changed!!
Thank you for listening..I hope I made sense..
Tammy

[dawn]

I don't know where you are getting your information from But I have to disagree with it. I was dx last march. Had my chemo, all tests and scans all covered by my provincial health care plan(Newfoundland). Which is no cost to us, whatsoever? You should count yourself as lucky. January 2006, Newfoundland Government decided to full cover Herceptin treatment, which I am taking now. And if I didn't have insurance to cover the drugs for sickness or side effects of the treatment the hospital would give them to me or my local cancer center has programs set up for this purpose. To ensure no patients have to do without their treatment, with a lot of support from the government and private sector to do this. Yes, luckily I have insurance. Prosthesis, wigs etc. can be gotten from these funds.. As I am over an hour away from my cancer centre, I was given gas cards from a provincial oil company to help with the purchase of gas from my car, when I had to travel back and forth daily for my radiation treatments. Not because I couldn't afford it, but because it is in place to help ease the financial, emotional, phyiscal strain of having to deal with cancer on a daily basis. I can't find one negative thing to say about the Health Care System or how I have been treated for the past year. We are so lucky to have the care we do in Canada. Not having to put off our illness or checkups because we have no insurance, Nohaving to do without medication, that we need. There is always someone that has it a lot worst, We have to look at how lucky we are. AS for the employment part, I haven't had any problems there either. I just started back to work Jan 07. When I have an appointment or treatment, there's no problem. My employee, personally, checks in on me to see how things are going and how Im feeling. In his words, "Ask for anything, you don't know who this is going to hit in your family." The other thing is, when you go for an interview for a job, you are under no obligation to tell them that you have been dx with an serious illness, and it is also illegal for them to ask. So I still don't see how having cancer is affecting the ability to get employment.
I hope things start looking up for you soon.

Dawn
Newfoundland, Canada

[tammymarie1971]

Dawn, I don't know if you were referring to me or not, but I do consider myself lucky that I am in Canada...especially for the first and second times around, However since my third time around I have been enlightened to many things about cancer treatment politics that I would no have known otherwise. I don't think it is unfair to ask for a chemo break while things seem stable..just to give my body a break from the almost 3 years of straight chemo..however I do think it is unfair that the Canadian government will not let me be on herceptin alone, so it is all or nothing and now that I've had a chemo with herceptin that is all they are willing to do in the chemo department with herceptin..
Tammy

[dawn]

Hi tammy,

Actually, I really wasn't directing my reply to you. But I just get a little frustrated when I hear people putting down our health care system, when in fact Canada has one of the best. As for Herceptin, Is it the provincial government government regulating it, or the federal government. I'm on just Herceptin alone at the present and will be until November, with no problems from either side. As I said in my last message, Herceptin was approved in Jan 06 by the NFLD health care system. With the Chemo, I don't know why the government is getting involved in your treatments. Myself and my Onocologist decide on my treatments, without any imput from the government. Just about everything other than the meds for sickness and my tamoxifen are covered my the provincial medical plan. My insurance kicks in for the tamoxifen, so I don't mind that at all. I have friends that have been advised by their oncs to take a break in treatments when things are good just to give their bodies a break. So I'm thinking it's the provincial plans that governs how things work. In that case, Im glad Im in Newfoundland. I always knew it was a wonderful place to live and raise kids. Now Im even more happy to be here, when I really need the support and help. Hoping that things work out for you .

Dawn

[Lolly]

Tammy and Dawn, as an "outsider" not as familiar with Canadian Health Care correct me if I'm wrong but I can see one big difference in your medical profiles, as far as the Health System is concerned:

Dawn, as an "Early Stage" survivor you will be on Herceptin for a relatively short time, one year.

Tammy, as a "Stage IV" survivor you will be on Herceptin indefinitely, except of course if the System is more interested in cost cutting than letting each individual patient customize their treatment plan to maintain Quality of Life, consequently the edict that if you go off Herceptin you can't go back on.

Sorry if this sounds cynical, but I think this is the difference between your situations.

Tammy, perhaps you need to make a lot of noise about this apparent discrimination. Maybe the reporter Merridith is in touch with would be interested in your story, if not for this current article but perhaps a follow-up?

Best to both of you, and you do live a a beautiful country. I was there in the early '70's; went on an epic road trip with my mom and some friends, cross-country to the Miraposa Folk Festival in Toronto. It was so beautiful there!

<3 Lolly

I don't want to get into a mix between Canadians other than to congratulate all of you on your excellent health care system, your lovely country, and your very friendly people. I do remember that Canada was rated either first or second in quality of health care last year or the year before. That was for all its citizens, of course, not just a select few.

If I had not hit 65 and become eligible for Medicare when I was diagnosed with a HER2 cancer after returning to the United States in December 2005 (I paid taxes here for more than 43 years), I would now be paying some $70,000 a year for herceptin.

Just yesterday I received a letter from my Medicare HMO informing me that it recently merged with another HMO. After looking at the Medicare drug insert that accompanied the notice, it looks as though I may be back to paying the $70,000. Alas, I don't have $70,000, but then I am luckier than most as I can return to Italy (like Canada, Italy has socialized medicine) where I established residency and thus have medical insurance. Herceptin was approved in Italy for early stage HER2 cancers before it was approved in the United States, and in Italy citizens get their health care at minimum cost. I pay 320 euros a year ($400) for my health care in Italy and my husband pays 320 euros. When I left the United States in 2001, I was paying $1000 a month (for myself and husband). I dropped our private U.S. insurance while living in Italy, as the monthly cost kept going up, finally to $1500 a month for the two of us. $800 a year versus $18,000, that’s quite a difference.

When my husband needed an emergency colonoscopy in Italy even before we had insurance there, it was done quickly, efficiently, and safely, and the hospital and doctor refused to charge him. To quote his Italian doctor, "we don't charge our own citizens, why would we charge you?"

I thought that those of you who don’t know about medical coverage in other countries might be interested in my first-hand experiences. <o></o>

[Merridith]

Hi Dawn:

I have just read your answer and would like to provide a rebuttal to your post.

Yes, Herceptin is covered. Lucky for you, me and others that can use it. Yup - so is transit to the chemo center - and yes - volunteers supply wigs etc.

Now what about Tykerb? That is a chemo that HER2+++ women might need. NOT covered by the Canadian government & provinces. What about neupogen? - not covered unless you have extremely special circumstances while on chemo. There are others that I can think of -including certain types of anti-nausia medication. Luckily, you didn't need them. Or you were covered by your extended insurance and didn't realize that others around you couldn't get it.

The medications that I mentioned above are shockingly expensive. I have sat in the chemo infusion ward and talked to fellow cancer victims who wish that they could afford them. They have been told point-blank that they aren't covered. I have a girl friend who was diagnosed shortly after me. And guess what - SHE didn't have extended medical. She couldn't get the access to the stuff that I could because I like you had a platinum extended health. (And yes, she needed it. She spent a long time agonising over whether to use the family funds to buy this stuff. And given her diagnosis - she decided NOT to deplete the family resources - great situation eh? )

What about the infusion costs for Tykerb? Not only do you have to pay about $50,000 for the med, but $250 @ time for each infusion. That's why there are private chemo infusion clinics springing up across Canada. Certain chemos are OUTSIDE of the paid portion our healthcare system. ONLY chemos that are not covered by the Canadian medical can be legally infused there for profit. And yes, these treatments are recognised by the Canadian government. They are not weird fly-by-night nut treatments.
The other main issue that I addressed was employment. You mention how well you were treated by saying "My employee, personally, checks in on me to see how things are going ". I assume that means that you are SELF-employed. The situation that I was discussing in my post is about employee situation. SELF-employed have much more control about how they are treated in the workplace.

You also say " when you go for an interview for a job, you are under no obligation to tell them that you have been dx with an serious illness, and it is also illegal for them to ask." This is true.

But in the real world info leaks out. It is legal for an employer to ask the reference "What type of attendance did your employee have?" hmmmmmmmmm ya think that someone might mention a two-year abscence? What about when you sign up for benefits at your new work site. It is illegal to lie by omission when you fill out the form. Is it possible that the new employer might have the opportunity to spot the information? It is much less likely to happen with a large employer who has well-trained human resources, but lots of little employers can slip up and take a peek and it would be almost impossible to prove.

And here is the final point that I would like to address - insurance. Once you're diagnosed you can't buy it. And since the Canadian government has just recently decided to put the cap on cancer treatment costs - there was no opportunity/motive for people to buy extended private insurance in advance of the announcement.

People like me thought that we were TOTALLY covered. Now we can't be. EVER. Once you're diagnosed it's too late to buy in. And the new employer's extended health insurance usually comes with riders to EXCLUDE previously diagnosed conditions. This doesn't apply if you are going back to the SAME workplace. You would still be covered. But I was trying to highlight a serious problem as I saw it. It is in the financial best interest of the employer to get rid of you one way or the other. Many employers don't do this. But many do. And then you DON'T have insurance. And won't be able to reasonably get it quickly again.

Again, this situation doesn't apply to you - you are not likely to fire yourself, or want to quit for one reason or another.
In answer to your final point - yes, I was treated extremely well. I had the best treatment that money could buy. Money was no object for me. I had the best doctors, nurses & the best everything. But being financially well off doesn't mean that I'm oblivious to the things going on around me and see the consequences.

Best Regards,

Merridith

[dawn]

Hi Merridith,

Tykerb is still too new to know exactly what is going to go on with coverage, etc. But when I did my chemo I had to have 1 neupegen shot for 10 days after the chemo which added up to 60 shots. It didn't cost me one dime. I also received Zofran, and Maxeran for anti nausea, once again Covered under MCP(Nfld coverage). I do have to pay for my Tamoxifen and another anti nausea drug with very little cost to me as the more expensive ones were covered by MCP. No I am not self employed, I work for an accounting firm here. I meant my employer, personally checks in on me. Since I only work throughout the tax season. I usually only work for six months of the year. The majority of Employers I think are sensitive and stand behind their employees in their time of need. As for the ones who don't, it doesn't matter where you live or what situation you talk about there are always going to be someone that is there to make things harder and only look out for the almighty dollar. That's just something in life we cannot change. For where I stand, it seems every province is different and Newfoundland, supposedly the poorest province, has a higher standard of medical treatment for its residents. We are all trying to deal with our mortality, when faced with cancer and the last thing you want to have to think about is money, or not getting your treatments. Personally, I find it appalling that a country that is rated number 1 and 2 consistantly for health coverage will let anyone go without. But then once again, is it regualted federally. A couple of friends of mine, who didn't have personal medical coverage, got assistance for medication from our social services department. As for tykerb, I'm told that once it is approved in Canada it will be covered by the system, just as Herceptin is. Hoping that BC can follow in the footsteps of the other provinces concerning its health care

Dawn

[Merridith]

Hi Dawn:

Your neupegen was covered by your province? Interesting. It definately wasn't covered here in BC as that was the med that my girlfriend so desperately needed.

Neither was zofran. I actually gave my remaining zofran to a fellow chemo patient who had been prescribed it and had to buy it out of pocket. She was being forced to cash in RRSPs.

I thought the drug policy was pretty well the same across Canada. Clearly it is not.

During my treatment, I was fortunate enough to be covered by two overlapping very high quality extended health insurances so I paid not a dime. So I found it shocking to hear about the serious financial struggles of those around me less fortunate who had only the standard BC Med.

Thanks for your insight.

Merridith

[AlaskaAngel]

As Alaskans, many of us travel through Canada regularly and so some do manage to experience health care as Americans in Canada. All comments I've heard from Alaskans have been positive.

In talking with Canadians about their health care, the biggest difference does seem to between provinces. Those that have the smallest population seem to speak the most favorably. Otherwise it sounds from here as though those who have incomes that allow other, additional means of access to health care are fairly happy with it.

Thanks, Meredith, for posting the potential pitfall that might be coming up for any Canadians here who might be unaware of it and without a safety net due to the chronic and expensive nature of the disease.

AlaskaAngel

[sherri]

Dear Canadian Friends,

The subject of Healthcare system is very interesting. I was in San Diego in November for Cure Conference, they had a session for healthcare in US. I wish you were there and could lesson to what people were saying, a lot of them wanted to move to Canada. I can't remember the name of the cordinator of the session but she was a Supreme Court Judge in Dallas. She was a survivor and she was telling people she would do anything to change the system in US. Harward University did a study about US vs Canada's health system and I think it was saying the cost of Canaidan healtcare is 1/3 of US and people are 40% healthier. I'll send you the study if I can find it. This is true that in US they have better hospitals, doctors etc... but this is only for employed people in good companies and of course rich people have the best of healthcare. 50 million people don't have insurance, saying that they even don't go for mamogram because they can't affort it. If I just think about myself and my family I'm one of those who profit most having private system in Canada. But I feel better when I sleep at night, to know that when it comes to health, we are all equal in Canada.

[mke]

The Ontario health plan doesn't cover most drugs but there is the Trillium program which takes over the cost after your drug cost come to a certain percentage of your income - I think it's 3 or 5%. I too had a pretty good drug plan so my costs were minimal.

I'm self employed and I doubt that is the answer to many problems. There is no such thing as sick leave or unemployment insurance. Our family's expenses were low due to my cancer, but we did notice the lack of income.

[Val Pfeiffer]

hi Merridith--
It is a tragedy that employers act this way. I had quite the opposite experience, and I want to tell you about it so that you and others know there are good people out there too :-)

When I was diagnosed, my current employer bent over backwards to help me. They got me a laptop and worked around my schedule. The CEO ordered pink BC bracelets from Target for every employee to have if they wanted one.

Then, because of my BC experience, I decided I wanted to get back into the health care field. Previously, I worked for the organization that included the health plan that had covered me through my cancer treatments (and had approved my request to step out of plan to get the radiation I wanted), and I wanted to go back and work there. Despite the fact that I knew the CEO very well, and that she and the medical director knew of my health problems, they hired me anyway...for a position that wasn't really in my range of experience, at least directly. (I think the work I did on my 80-page radiation request document helped.) But I thought wow...how cool it is that a company would hire me knowing that I have some serious health issues!

Best of luck with your efforts--this is an important issue!
Val

[Louise O'Brien]

Hi Merridith

Just to confirm what a few others have said: The health ministries in each province decide their own cancer protocols/treatments/approval of drugs etc. And they can vary from province to province. Last fall Toronto's Globe and Mail produced a huge series on cancer and one of their articles focused on the differences between provinces when it came to treatment and funding.

The approval of Herceptin for early stage breast cancer is a good example. Even though it was approved for use by Health Canada (which is a federal government agency that investigates and approves drugs for use - similar to the FDA in the U.S.) not all provinces jumped on board at the same time.

In July 2005, Ontario, Quebec and Saskatchewan approved the drug for early stage BC (one year before FDA approval in the U.S.). British Columbia followed in November 2005. I don't know when the other provinces weighed in.

If you're aware of a treatment, drug, protocol or financing issue accepted by other provinces, the first place to direct your concerns is the health ministry in your own province.

[sherri]

Hi Merridith,

I have to tell you my story and I really like to get interviewed by the magazine.

In our company we have had Dental and Extended Benefit with Manulife since 1990. I’m also the plan administrator. After I was dx with Cancer, they paid for some of drugs that BC Medical didn’t cover, and they didn’t pay for those drugs you get in hospitals, because according to law, any drug that is administrated in hospitals must be covered by BC Medical!?
When we started with Manulife the cost for family was about $112.00 and every year they increased it according to the cost and we were paying about $200 per family when I was diagnosed. I came back to work and after 2 month I saw the $200 has been doubled to $400. I called Manualife and complained, then I received a call from their representative in <?xml:namespace prefix = st1 ns = "urn:schemas-microsoft-com[img] /><st1:City w:st=[/img]Vancouver</st1:City>, he told me you know you have an employee that has Cancer and if you can get rid of her we can put you back to the same amount as before. I told the guy, for your information that employee happened to be me and I don’t want to get rid of myself yet! Anyway we changed Manulife and now we have another company, but I have to tell you I don’t trust these Insurance Companies and that is why I don’t want private insurance. Maybe this is one of the reasons employers don't want to hire people with Cancer. Of course this is not acceptable and I think we should go after them with anything we can.

[sherri]

When we started with Manulife the cost for family was about $112.00 and every year they increased it according to the cost and we were paying about $200 per family when I was diagnosed. I came back to work and after 2 month I saw the $200 has been doubled to $400. I called Manualife and complained, then I received a call from their representative in <?xml:namespace prefix = st1 ns = "urn:schemas-microsoft-comffice:smarttags" /><st1:City w:st="on"><st1lace w:st="on">Vancouver</st1lace></st1:City>, he told me you know you have an employee that has Cancer and if you can get rid of her we can put you back to the same amount as before. I told the guy, for your information that employee happened to be me and I don’t want to get rid of myself yet! Anyway we changed Manulife and now we have another company, but I have to tell you I don’t trust these Insurance Companies and that is why I don’t want private insurance. I think this is the main reason those greedy employers don;t want to hire or rehire people with cancer. But this is not acceptable and we should go after them and make a law against any kind of dicremination.

[Lani]

Tykerb is a pill and does not require infusion.

Hope this helps!