Cancer is not fair, but accessing cancer treatments should be.
When there are inequities in our health care system, it’s the patients and their families who suffer the consequences. If you or someone in your family have faced challenges getting cancer treatment, including out-of-pocket costs or delays in filling prescriptions, consider sharing your story. By adding your voice to the campaign, we are stronger in our mission to help ensure all patients receive high-quality cancer treatment at home and in hospital, regardless of age, cancer type or postal code.
Please share your story in the form below and we may add it to this page. Here are some of the responses we have received:
Marion - Manitoba:
My name is Marion, I was diagnosed with kidney cancer at the age of 36 year. I was lucky as my cancer was cured by surgery.
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I did get involved in Kidney Cancer Canada and realized that not all kidney cancer patients are as lucky as me. Many of my fellow kidney cancer patients lived with advanced cancer and did not have access to treatments without having to remortgage their homes. Many were not options beyond a first line therapy because there was little funding for treatment in several provinces. Cancer is not fair and not certain. Let’s change that by levelling the access and treatment landscape for all cancers, not just the big 4! Let’s be certain we all have a chance.
Keri - Ontario:
People really aren't aware that the cost of all cancer medications aren't covered. I've heard so many times, "but all cancer medications are covered in Canada!"
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My friend was diagnosed with stage 4 non-small cell lung cancer with ALK gene rearrangement. For this type of cancer, oral medications are the drug of choice over conventional I.V. chemotherapy. His doctor had recommended he apply for clinical trials at a major cancer centre, so the cost of his medications would be covered. Unlike many people, he does have supplemental drug coverage through his employer that had agreed to cover the cost of the take-home cancer medications. But he thought if he became unable to work, which is a very real possibility, he would lose his drug coverage. Realistically who has $7,000-$45,000/month to pay for drugs, especially if they're not able to work? He was also concerned that with such expensive drugs, having them covered by the insurance company might drive up his employer’s premiums. Or they may decide they no longer want to cover them. He opted for and was accepted into the clinical trial program, so all of his drugs are now covered, but not everyone is eligible for this. He's on his second trial now. The first shrunk all of the tumours throughout his body but wasn't helping his brain. Now he's on one with better brain results.
Thank you for raising awareness that not all cancer drugs are covered equally. Many people aren't aware of this fact until they or someone they know needs them.
Karen - Ontario
I am a stage IV kidney cancer patient, 60 years young!
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I’m not currently on active treatment, thanks to multiple recent surgeries to remove my metastases. But I sure worry about how I’ll afford certain drugs if needed, in years to come, when they currently cost $6,000 per month. Living with cancer shouldn’t include this extra stress. Being able to self-administer oral chemo meds at home saves our medical system so much in reduced chemo wards, staffing, beds, etc. – these meds should be covered by our medical system, same as they would be if we received them in hospital.
Sharon - Ontario
Diagnosed in 2001 with Leukemia, still no remission. I am on take at home chemo pills until the day I die or until they have a cure.
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My cost of meds is over $5000 a month just for the chemo pills not the other 6 pills to counter the side effects, which are not paid for by the government because they are take at home chemo medications. Ontario needs to catch up with the Western provinces and some of the Eastern provinces, which cover take at home chemo medications. Glad Ontario has approved it for children but the baby boomers are the majority of the population with cancer.
Tricia - Ontario
I was diagnosed in November 2016 (de novo) with Metastatic Breast Cancer. The healthcare system has been efficient at providing me with expedient support and treatment. In my 6-months of intravenous chemotherapy, I learned about the possibility of one-day needing a take-home-pill, as an ongoing line of defence against cancer.
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It actually terrifies me that access and affording this treatment is out-of-pocket. I have been a stay-at-home-mom for 8 years, and my husband has been self-employed his entire working career. Not only would this be a huge stress factor, it would exacerbate the financial strain.
I’ve been imagining what I can do – including applying for work; I think of the family-and-friends who may be in a position to help BUT it all seems to compound the stress and burden. I have jokingly discussed that my family of five would NEED to move to a province in Western Canada (uprooting their lives) to afford me access to treatment — but nothing about it makes sense to them, or me. WHY would I want to cause further stress?
Access to oral take-home drugs in Ontario will one day be my reality. While a cure of Metastatic Breast Cancer seems unlikely in my lifetime, I can only HOPE that I will be able to extend my life (both in quality and longevity) with Government funded drugs. Having cancer affects me personally, but it is a legacy that will also affect my family-and-friends.
Tarja - Ontario
I've now just completed 12 months of chemotherapy, to the tune of $4,000.00 a month.
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I had already been on this same treatment 6 years prior for 24 months. Pill form taken at home, not covered by OHIP but thankfully I do have INSURANCE. However there still is the huge financial burden of having to travel 10 hours to my oncologists appointments every 3 months, with hotel accommodations etc. I've been on this journey for 20+ years. However I'm Thankful to be alive, living WITH CANCER.
Kevin - Ontario
I pay $6,400 a month. My meds come in pill form, if it were an IV it would be covered by our government plan.
Becky - Ontario
I am a 36 year old single mom (one child) living in Ontario.
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I have a great job that provides extended health benefits. I also work a part time job to cover my extras.
I was just recently diagnosed with a rare form of leukemia – Chronic Myeloid Leukemia. My life has been turned upside down with just one blood test. I have a wonderful doctor and am being treated in a great hospital. My doctor assured me this is a very treatable disease, and there are fantastic drugs available that will keep this in control for the rest of my life.
He asked if I had any medical coverage, as normally this disease is quite often diagnosed in patients over the age of 65 – of which the Ontario government covers all their drug costs. He wanted to start me on imatinib right away, however due to the cost it needs prior approval from the insurance company. In the meantime I started taking Hydroxyurea waiting for the approval.
It took 2 weeks, 3 emails and 2 phone calls to the insurance company but I finally have an approval – subject to my deductible and maximum benefit. At this time I still don’t fully know the amount of out-of-pocket expense I will have as I am waiting for the insurance company to confirm at what % they are covering the medication. The approval is also only valid until July. They are giving me 6 months of coverage and then I have to re-apply for the special acceptance. Not sure what will happen in July?
Dealing with the insurance, and worrying about how I am going to find the funding for this life saving cancer drug has been one of the worst things I have ever experienced – even worse than coming to terms with my cancer diagnosis. Hundreds of thousands of dollars are spent in cancer research to develop these drugs, to save peoples lives – but what good are they for people in Ontario if we can’t afford to take them? Or have to deal with the stress and financial burden?
We live in Canada. This should not happen.
Cheryl - Nova Scotia
My mother was diagnosed with stage 4 kidney cancer December 2015. She's is currently on her first line treatment which is given orally. All Canadians should have the same equal access to treatment.
Marianne - Cambridge, OntarioMy husband, Paul, has advanced kidney cancer. He's taking Votrient, an at home-chemo drug.
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If he wasn't eligible for EAP (exceptional access program for people over 65 in Ontario) we'd have to figure out how to pay the $6,000.00 plus per month for the drug. We are very grateful that he's covered but feel outraged that the drug for cancer patients under 65 isn't funded. We are both active advocates lobbying government to change this. It's not fair to make cancer patients worry about how they will be able to afford a drug that will treat their kidney (or other) cancers. I volunteer with both CanCertainty and Kidney Cancer Canada; I use social media everyday to raise awareness, and I fundraise to find a cure. I urge other cancer patients to speak up as well. Please tell us your story. We need many voices to bring about change.
Sharon - Niagara Falls, OntarioI myself have had great problems with getting my leukemia medications had a lengthy and gruelling wait.
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My meds that were covered through the Exceptional Access Program (formally Section 8) were giving me side effects and not making me any better so my doctor prescribed a new drug that is not covered by the government therefore I had to find insurance to cover it which costs around $5000.00 a month, I came up with insurance to cover it but I had to pay the pharmacy first then the insurance would reimburse me some time later. My problem I do not have the $5000 to pay out let alone wait till they reimburse me.
I got paper work sent by mail from the insurance company for the pharmacy to fill out and agree to have the insurance company be billed directly from them and not have me pay the pharmacy first. I got that filled out from the pharmacy then had to mail it back to the insurance company I could not fax it or anything they needed it mailed so this took even longer, keep in mind while this is going on I have zero medication for my cancer.
I finally received the okay via mail from the insurance company and took it along with my prescription to the pharmacy only to find out they could not get the medication in the dosage I needed. Now I had to source out finding what pharmacy could get the dosage I needed which ended up being in Burlington and I live in Niagara Falls it was the closest to me. Fine now I have to start over and get them to agree to charge the insurance company directly and the insurance company to agree also which meant the same paper work all over again and another 3 week to 4 weeks of that. Finally after at least 2 months of this with no medication what’s so ever and the stress it caused and poor health to me I finally received it via Fed-Ex, which then I had to sign papers which were in with the meds and find a Fed-Ex Depot in Niagara Falls so I could send it back to the pharmacy in Burlington.
This is and was such a bad run around just to get medication for my cancer and hopefully get into remission. Nobody should have to go through this or even worse on top of being sick get even more sick with the stress, run around and lack of meds in their system.
Tammy - Manitoulin Island, OntarioWe are very lucky that Shawn's clincal trial is covering the cost of the cabozantinib that he is taking now. The next drug in the line up of treatments for renal cell carcinoma is Everolimus.
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Everolimus costs around $7000/month which is $84000/year! This would be covered by the provincial health plan in the Western provinces but is not covered in Ontario and the Atlantic provinces! Something needs to change. Cancer isn't fair, but access to treatment should be!
Karen - OntarioMy son is a three time malignant brain tumour survivor. We have no benefits (or income at the moment), and one of the drugs my son takes is not covered by Trillium Drug Plan.
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If he was a breast cancer survivor, it would be covered but since he is a 15 year-old male, it is not.
Tricia - Hammonds Plains, Nova ScotiaI was appalled to learn that oral treatments are not covered provincially or by some private insurance companies.
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I have been living with Leiomyosarcoma, an aggressive rare soft tissue cancer, since October 2012 and to date have been able to access treatment and services quickly, efficiently and in a timely manner. My oncology team has been amazing and have supported my journey with professionalism and compassion. Although there is no cure, I have remained positive and am healthy. After 3 separate sessions of treatment with IV chemo and radiation, the cancer has recently progressed. The team at the NS Cancer Centre has recommended an oral treatment that has been approved and shown some efficacy is slowing the rapid progression of this disease. This may be one of my last options. I was appalled to learn that oral treatments are not covered provincially or by some private insurance companies. I am in the process of being guided to explore other funding options with the assistance of a Medical Resource Specialist. I would never have dreamed I would have to use the energy needed to live with cancer to address this critical issue of catastrophic drug expense!! Nor would I have thought Nova Scotia would be one of the few provinces that have no policies or legislation to address this concern. Oral targeted treatments have been in use for many years and offer the most current evidence based medications for positive outcomes for those of us living with a terrifying life threatening condition. Now is the time for change. I am grateful for this site to share in a united voice to advocate for provincial wide standards in cancer treatment coverage regardless of where or how it is administered. Take action; spread the word for equal access and do it now.... we don't have time to waste.
Cate - Ottawa, OntarioI have Neuroendocrine Cancer in my pancreas and bones. These are metastases from a bronchial tumour removed in 2010 along with my right lower and middle lobes.
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Even though I was given a good prognosis at the time, these mets were discovered this year when I travelled to the US to get a Gallium68 scan (not in Canada yet). I get a monthly injection of Lanreotide to control the hormone production and progression of these tumours at a cost of $1700 monthly. My insurance plan covers me for $3000 annually so the rest is out of pocket. This is covered by provincial insurance in some provinces but not Ontario. I will be on these shots until a better alternative comes along. I may also have to consider an oral cancer medication called Afinitor which is thousands of dollars a month and also not covered by OHIP. This is a chronic cancer with no cure, just very expensive treatments to try to keep it under control. Most of the treatments are out of pocket.
Michelle - Canmore, AlbertaTo this date, I have never had to fill out any forms to get my meds. They are fully covered for me.
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No-one has ever asked my wage. There are no dispensing fees nor caps on the costs. I am fortunate to not have a meds expense nor the financial stress it creates. I was unaware that this was not the experience for ALL Canadians when I was diagnosed. I only found out about this inequity from joining the CML facebook page where I saw Canadians talking about costs of the drug and was very surprised. It is not right....as Canadians we need to be treated more fairly across the country. I do not have to worry about retiring and having access to this drug as my drug plan does not cover a cent of it.
To this day I have not had to fill out any forms regarding having CML other than for the short 3 month sick leave I took from work as advised from my doctor.
When I first was diagnosed, I went on the MAYO clinic website a lot and would notice the fundraising tabs....and would say to myself, "Well at least I don't have to stress over that to pay for my meds because I am Canadian." I guess I should revise that thought to state because I am Albertan. I am happy not to have this stress but it angers me as a Canadian as this is clearly not right.
I had not thought that my disease would be the factor in deciding where I choose to retire, but it may have to be.
I was diagnosed in December 2012. It was a week before Christmas but my Canmore small town family doctor in Canmore managed to get me into the CalgaryTom Baker Centre, Foothills Hospital, in 24 hrs of discovery of my bloodwork. I credit my family doctor for expediting my file as I was able to get a bone marrow biopsy within 24 hrs of being admitted.
Tests were done on me immediately and I was given Hydroxyurea to begin right away. I was home 3 days later waiting diagnosis but told that it was 95% likelihood CML.
I was told by the hematologist who did the biopsy that they confirmed CML and told to meet with my assigned hematologist 1 week after the holidays. I was then presented with 3 possible drugs. Gleevec, Tasigna and Sprycel. I was told in consultation with the Tom Baker's Pharmacist, that for my situation that Tasigna and Sprycel would be the best options. I was told that I would be the one to make the decision as to what was better for me. I was presented with both options, how they worked, the known side -effects of each but never told how much they cost nor ever asked how much money I make or even if I have extended health care through work.
I chose Tasigna based on the information given to me. I was given a weeks worth at the pharmacy right at the hospital. I attended weekly visits with my hematologist and was given weekly supplies for the next 4 visits. (1 month).
I was progressing well 1 month in, so I was allowed to start coming every 2 weeks and was given the supplies for 2 weeks at each appointment. After 2 months, I was told I could start coming back every month. They gave me a whole month's supply of meds at each visit.
I had started experiencing skin rash side effects that were quite severe. I was itchy all over. It was suggested to me if I wanted to make the switch to Dasatinib (Sprycel).
I began Dasatinib at this point. I continue to come for bloodwork and visits every three months. The hospital pharmacy will only dispense 1 month at a time. To obtain the other 2 months, I phone in with my cancer number and my mailing address 10 days before I am out, within a couple days, my pills arrive in the mail. I never have a bill and I have no idea how much they cost. Price is never a determination nor criteria of which drug I take.
Carol - Erin, OntarioIn September I was started on Nexavar which was about $6400 per month. My insurance covered half and the hospital found funding for the other 50%.
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My name is Carol Mifsud from Erin Ontario. In 2010 I was diagnosed with follicular thyroid cancer stage 4C. I had a thoracotomy to biopsy my lung tumour, confirming my dx. I had a thyroidectomy within 10 days. My surgeon initially offered my surgery in three months! I refused to leave his office until he gave me a closer date. 'Miraculously' I got a surgical date the next week. RAI was booked 28 days later so I had little time to heal. A PET scan showed Mets to both lungs, mediastinum. We need to include PET scans in diagnosing cancer. Had it not been done, my external beam radiation would have only been done to my left lung. The PET scan completely changed the amount and direction of my radiation. The EBR caused severe burns at the exit site between my scapula and burned my esophagus from palate to pyloric. I lost 18 lbs in three weeks. My husband can't work as he looks after me and we live on my insurance benefits. Spouses should be paid as caregivers. He was a contractor and because he was independent he cannot qualify for spousal care benefits. In January 2013 I was diagnosed with metastasis to my skull bones. 5 doses of radiation caused my waist length hair to fall out of the crown of my head. In September I was started on Nexavar which was about $6400 per month. My insurance covered half and the hospital found funding for the other 50%. It's a pretty tough drug to be on. Abdominal pain, diarrhea, weight loss and almost complete hair loss. In 2011 I was told I was terminal with possible 5 year left. I had to leave my nursing job and went on LTD. I struggle with feeling useless as I've been hardworking determined and independent all my life. Cancer has really stolen a lot of my life. But it has made me appreciate a lot of things I took for granted.
Cathy - Edmonton, AlbertaI was diagnosed with stage 3 Follicular thyroid cancer with metastases to several bones, 2 lymph nodes in the neck and metastases to my liver in 2012.
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Since then I have had four radioactive iodine treatments in 18 months and radiation therapy to my ribs on the left side and the left pelvis. I had to get Thyrogen for my first radioactive iodine treatment and had to pay for my portion of this medication, about $360 (the amount covered on my medical plan). I have more spread of metastases to my liver and bones and my radiation oncologist stated I do not qualify for a oral cancer drug for iodine refractory thyroid cancer because I still absorb iodine.
I saw a medical oncologist in Edmonton and am now waiting to get compassionate funding for sorafenib (Nexavar). This drug costs about $6,000 monthly and my LTD benefits for medical and dental will be terminated August 31, 2015. I also have to enrol in another drug plan but I am limited in which ones I can join because many require medical information. I will now pay for my medical and dental plans costs because mine were paid by my past employer.
The cost of cancer drugs needs to be fully covered. I do not understand why the drug I may get on is paid for other types of cancers (liver and kidney) yet I already have several liver lesions.
I would like to move back to Ontario to be nearer my daughter and grandchildren but am concerned that my cancer drug costs will be even higher in Ontario. Unfortunately cancer is keeping me in Alberta and away from my family in Ontario.
Tom - OntarioOn November 23, 2014 I was diagnosed with Non-Hodgkin Lymphoma, primary Central Nervous System.
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Several days later I underwent brain surgery to remove one of the tumours. Since then I have completed five chemo sessions (4 days in hospital each session), and 20 radiation sessions. All of this was done at Sunnybrook in Toronto. Fortunately, pretty much all of the costs have been covered by either OHIP and/or my company’s health care plan. However, on the 1st, 3rd and 5th chemo sessions I was prescribed Procarbazine which I had to take for 7 consecutive. Days 1 – 4 were while I was in hospital and covered by the government; I was discharged on day 5 therefore I was responsible for the cost of these 3 days in each of the sessions it was prescribed – same drug, same instructions as when I was in hospital…..go figure? It is interesting to know that Procarbazine is not widely available and can only be obtained through a few pharmacies, Oddette Clinic at Sunnybrook being one.
Tiffany - Orillia, OntarioI had to spend most of my tax free investments to get medication before my drug plan kicked in.
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They need more grants and awareness of financial support for those who can't afford it. Realistically I would have died without the money I had saved. Now it's gone it can't be claimed because it was in a tax free savings bond. I had to spend all the money I had in my life savings to live.
Jan - OntarioThank you for this site. Unless you have been there, it is a dirty little secret.
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My friend's young son has cancer and has been fighting since 2 years old. At 7 they are facing losing their house due to all the costs to keep him alive. This is wrong.
Brendan - Ottawa, OntarioI was diagnosed with prostate cancer in 2011. When my prostate was removed the doctor found the cancer has spread to my lymph nodes so my surgery was followed up with 8 weeks of radiation & hormone therapy injections every four months for a year and a half.
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These cost $1,600 per injection and are not covered under Ontario’s health plan. After the injections stopped I appeared to be in remission for 2 years until tests indicated that my cancer reappeared and had spread to my spine. I am now back on a different type of hormone therapy, this one costs $1,300 per injection every three months and is still not covered by OHIP.
Ed - Windsor, OntarioMy late wife went through chemo treatments and had to have a prescription for a drug in between treatments which cost $2,500 for 10 injections. She had to do that 6 times with a max on her drug plan of $2,500 per year.
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After the first round her plan was all used up, not covered in any other way. We were facing a huge bill of about $13,000. Thank God my wife's employer paid this for us and we where so grateful. When you are going through any kind of sickness, what ever the severity of it, the last thing you should have to worry about is your medication cost. Not every one is blessed like my late wife where the employer says "you concentrate on getting well don't worry about your scripts." So I say come on leaders of our country move forward so the next cancer patient is not stuck with a humongous bill or they don't get the meds they need because of cost. We live in Canada not in a poor country... Just saying. I will add to this that the following in 2013 my late wife went through chemo again as the cancer came back and the same drug was needed again we where in the situation again facing high drug cost and thank God her employer paid for her drugs again at apprx $12,000.00 unfortunately she passed in May, 2014.
Sue and Dave - OntarioDave and I are very interested in the cost of cancer. In April of 2013 Dave was diagnosed with stage four prostate cancer.
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Currently he is on Xtandi a drug with a cost of 3, 682 for a month. It was our "one time covered medicine". That was out of a choice of 3 the other 2 being Zytiga with prednisone or a chemo treatments called jevtana. We do not know what happens when this drug fails as is the case it only works for a while. I never in a million years would have imagined ourselves being in such a position. There is no plan for us and I feel we are riding this by the seat of our pants so to speak. I am not sure if just every chemo treatment is even covered given that jevtana is given in a hospital setting but would have counted as our 1 pick. We don't know what is next but I know I am as well going after the ministry of health on drug coverage for cancer.
Ann - Ontario
I had chordoma. Proton beam radiation treatments for chordoma cannot be repeated in the same area.
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If my chordoma recurs and cannot be surgically removed again, the most hopeful treatment is Gleevec which is in pill form and very expensive.
Peter - Toronto, Ontario
Diagnosed with Chronic Lymphocytic Leukemia CLL at age 59 and treated six months later with three rounds of FCR at Princess Margaret Hospital.
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I have been in remission for two years. The present protocol for relapsed CLL is to repeat the FCR cocktail but increasingly the drugs are given as take home medication. A fellow patient who was treated last year was obliged to follow the take-home regimen and was charged thousands of dollars.
Lori - Nova Scotia
My name is Lori, and I live in Nova Scotia. In July 2013 I found a lump in my right armpit.
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As my mother had passed from breast cancer I immediately panicked and saw my doctor. A mammogram was scheduled for a few days later, and while it was clear it revealed that the suspicious lump was an enlarged lymph node. I was referred to a surgeon for consultation and to await a biopsy.
Just a few short weeks later as I still waited for a biopsy date, my husband and I were surprised to discover that after 10 years of marriage and long since abandoning the idea of having children that we were expecting our first. So many questions and thoughts ran through my mind. OMG we’re having a baby! But what if it’s cancer? what does that mean?
In September I finally got my biopsy and the results confirmed cancer. The shocking part was the type. It was metastatic melanoma which had spread from an unknown primary site to my lymph nodes. I am not nor have I ever been a sun worshipper, and after being gone over with a fine tooth comb inside and out to search for the point of origin of my cancer none was found. I was referred to an oncologist and told that I would need surgery, but we had to get me about halfway into my second trimester first. I’ve got this…I have a baby to worry about and i will beat this I told myself. BRING IT ON!
Just two weeks after my diagnosis, we went for our first ultrasound. We were so anxious and nervous, and simply hoping the doctor would tell us we had a healthy baby growing in there. The nurse was suspiciously quiet during the initial part of the scan. She said nothing but kept looking and probing. I saw flashes on the screen but nothing recognizable and we kept thinking “just tell us what’s wrong with the baby.” That’s when she said it…“Well I have some news for you guys….you have TWO babies in there.” TWINS! What else could life throw at me at once?
Fast forward another month or so and I had surgery to remove the lymph nodes in my right armpit. 28 in total. I waited what seemed like an eternity for the pathology results. Finally close to Christmas my oncologist called. It was good news. Of the 28 nodes, the other 27 were negative. I had an “aggressive malignancy” in the one large lymph node but as far as my oncologist was concerned it had not spread. We would need to wait until after the birth of the babies for more scans of course but there was no reason not to continue the pregnancy and I could relax a little.
Our beautiful, healthy twin girls arrived in February 2014, 7 weeks premature. They are our incredible little miracles and thrived from day one. In April I got my CT scans and heard those magical words…there is NO evidence of metastatic disease. I will continue to go for scans every 4 months for a while as I have some “non-descript nodules” in my lungs requiring follow up but I remain optimistic and positive that each scan will be clear.
Sue - Ontario
My name is Sue and I was diagnosed with Pituitary T-Cell Lymphoma which has since become Peripheral T-Cell Lymphoma.
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It is an aggressive cancer that works its way quite quickly through the lymph nodes and bone marrow. In order for me to survive I have received CHOP+R and am now on the EPOCH regime. I receive chemo 5 days a week, 24 hours a day every 3 weeks. I am SUPPOSED to follow week 1 of the cycle with Neupogen for five days. Without the Neupogen my system cannot keep up with this level of aggressive treatment. Without the treatment I will die. Ontario doesn't cover this drug, at $300.00 a vial. I work 10 hours a week, this pays part of my deductible for Trillium. I cannot take this drug regularly AND pay my rent, AND pay my bills, AND eat.... and Ontario doesn't seem to care.
Wendy L. - Winnipeg, Manitoba
I am on monthly chemotherapy to address cancer that was diagnosed last June.
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The medication that I use is an oral medication that I take at home. So far this has been a good thing for me. This medication is very expensive. The first treatment was daily for 42 days and cost of over $7,000; then 5 days each month costs $1,700. Luckily, I live in Manitoba which means this chemo medication is covered by Manitoba Pharmacare at no out of pocket expense to me. In Manitoba if a treatment is approved for funding, it doesn't matter if it is taken by pill or in an IV.
However, the same is not true for cancer patients in Ontario or Atlantic Canada. If the treatment the cancer patient needs in these provinces is an IV chemotherapy, it's covered. However, if the most effective treatment is a pill (or in oral form), it is not funded and patients can face significant delays in getting their treatment (up to 2 months!) and pay significant costs. You can read some of these heartbreaking stories here.
Oral treatment are the way of the future - the majority of treatments currently in development are oral therapies. Most importantly, this is not only an issue that patients today are facing, but anyone who faces a cancer diagnosis in the future.
Marc - Ontario
My name is Marc. I am 52 years old. I live in Ontario. I survived Malignant Melanoma, stage2 in 1993.
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I was diagnosed in Oct. 2013 with stage3 Metastatic Malignant Melanoma, B-raf mutation positive. I have since had surgery, (level 3 Axillary Lymph Node Dissection, 14 lymph nodes removed from left armpit area). I have received 20 treatments of radiation. I was reviewed by a clinical trial oncologist. He said I would not need chemo therapy this time around, but should it return, I would be placed on Interferon. In a hospital setting, Interferon is covered. In a home setting, self injections are not. Why is it not covered in Ontario?
Krista - Calgary, Alberta
At 29 I was diagnosed with Chronic Myeloid Leukemia (CML).
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Living in Calgary, Alberta at the time, I received the immediate care that was required along with the drugs that ultimately saved my life, thankfully at no cost. As I look to future plans I am considering moving home to Newfoundland to be near family. In preparation for the possibility of moving I made a few calls to inquire about health care and drug coverage. After getting NO straight answers for several weeks to several departments I was very discouraged. Each department sent me to the next, with still no answers. All I wanted to know: is my Gleevec covered if I move home? The closest I got to an answer was all ifs. If I was approved and If my drug was approved and depending upon my income it would depend which program I might be considered for and then I would pay a percentage. Holy moly what an ordeal. I can imagine how difficult this situation must be for a lot of people much sicker then myself. It's maddening. Thankfully right now I am doing very well on Gleevec. But the thought of the move home under these healthcare conditions is concerning to say the least. I hope by the time I make the decision to move home the universal coverage for oral chemo is approved and put in place. It would take so much stress out of Canadians lives to be able to heal and make things a little easier on us all.
Alexandra
I am a young person living with advanced (stage iv) inflammatory breast cancer. I am in my 30s and on long-term disability due to my illness and treatments.
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However, in addition to my 3 years of dealing with cancer, and not being well enough to work, I have had to spend days on end, sometimes full months, wading through paperwork in order to get approval for coverage of the oral chemotherapy and target therapies that has kept me alive. I have also been on IV chemo, and it has its place, but the difference in quality of life for me is drastic! On one I can do things, get out, take part in life, on the other I am stuck going to the hospital every week, sometimes 2-3 times a week. Beyond IV chemos being easier to take, there is the fact that having advanced cancer, my fellow cancer thrivers and I need to have access to the full range of treatment options....it's what's keeps us alive. Contrary to the current perception, folks with advanced cancer can thrive for many years.... I just learned how to surf this year and am working on releasing an album! Finally, as others have mentioned in the campaign.... people who are already faced with fighting cancer should not have to deal with fighting for their rights as well. In my case it has happened twice now that I had to be dangerously "off treatment" due to the fact that the month-long paperwork got delayed. Doing that paperwork and making those calls to get my medication coverage.... knowing too that my life was at stake... was the most stressful thing I've ever been through in my life. Need I say more?
Jillian
My father has stage IV RCR. We are fortunate enough that my father's private insurance through work covers 100% of his medications.
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However he is forced to remain with his employer in order to continue to have his treatments covered because he is now uninsurable. There are many more patients who are not covered through private insurance and the costs of medications can financially cripple a family. For patients who do have private coverage they are pigeon holed into remaining employed even if it is not in their best interest. The current funding system is based on a time when IV treatment was the only treatment. This is no longer the case with a growing number of cancer treatments being administered orally. We need a system that supports this change and relives the burden from cancer patients and their families so they can get back to the things that really matter.
Jane Harvey - Alberta (formerly Ontario)
I was diagnosed with CML in March of 2010, and started on Gleevec the following month. I received health care in Ontario until August of 2013.
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Just after diagnosis my pharmacist told me that my treatment would cost a lot of money and it was not covered by OHIP so I better make inquiries as to how I might be able to pay for it. I asked the pharmacist how much the drug would cost, and I was told it was over $4,000.00 a month. I did not have extra insurance to cover the cost of the drug. I imagined I would have to mortgage off my house, it was such a shock. I didn’t know how I would pay for it at all. Lucky for me, I had an option of being in a study and that put me in touch with another specialist who told me about the trillium program. That meant that my co-pay would be about $900.00 per year. However, I was able to get help to defray that cost through one of the drug company programs. I moved to rural Alberta in September of 2013, and I have noticed quite a difference in the approach to my care. I have access to a Nurse Navigator in Barrhead, where I live. She helped me arrange health care, transfer of records, and located labs that would do my PCR. Here in Alberta I have my PCR done one month prior to the specialist appointment, and I receive and discuss my results at the appointment with my specialist the following month. My drugs are sent by mail to my post box, I phone the Cancer Clinic pharmacy 2 weeks before my last dose on hand, and the medication is delivered within a few days. Also my family doctor sees me within a week of my specialist appointment so we can go over my results and the letter he has received from the specialist. The pharmacy where I order my regular medication is very aware of me being on Gleevec, my lab results, and I feel it is a real partnership. There have been no stressful times as to how I will get my drugs, what do I do if I have a problem. I must admit I feel more satisfaction with the system here.
Dana
My current oral drug (Afinitor) costs $6000/month. My deductible with Trillium is $6600/year because I continue to work and bring in an income.
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My private insurance coverage is maxed out at $7500/year but it doesn't even cover this drug anyway! I want this discrimination to stop! Equality for all Canadians!
Patrick McConnell - Burlington, Ontario
I was diagnosed with SLL/CLL in 2002 which is an indolent form of blood cancer.
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Outside of being anxious and stressed every 3 months for blood tests, I have not yet required any treatment. There are so many treatments available for this cancer with many successful trials with non chemo drugs now being prescribed in the US. I know that these wonder drugs will be a long time coming to Ontario and the government’s reputation for being pathetic in this area, is very unnerving. Hopefully these priorities will become priorities and it is groups like yours which can only benefit us.
Connie - Waterloo, Ontario
In January 2013 my mom was diagnosed with an oligodendroglioma brain tumour.
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My family and I were with my mom and the fear we all felt about this diagnosis was further compounded when someone came in to discuss the cost of the drug temozolomide and that it may be a problem if we didn’t have good drug coverage. We were given numbers to call and forms to fill out. The only thing I wanted to focus on that day was my mom’s health and not how we were going to afford her treatment. It is too much for patients and families to try to process all of this when dealing with a diagnosis. It was a lot for us and I’m glad that my mom had us there with her. I can’t even imagine what it would be like for a patient on their own to try to manage and navigate their way through this maze. My parents had an amazing drug plan that covered the drug temozolomide completely for my mom. Just a $3 prescription fee for each prescription is what they had to pay. The cost of treatment over the year totaled nearly $80,000. My dad has now retired and they are no longer on that plan. Fear lives in my heart for the day that may come when my mom needs to go back on this drug at a stronger dose and for a longer period of time and they don’t have that coverage. We will have to jump through hoops and try to find a way for my mom to get coverage for it or pay thousands of dollars if we can’t. I don’t think this is right at all. This drug is giving people more time with their families. I can’t think of a better way to spend my health care tax dollars.
Anne Marie Cerato - Ontario
I am currently on a targeted medication to treat my stage 4 ALK+ lung cancer that is and has been saving my life for two+ years.
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I am fortunate to be on a clinical trial, but if I wasn't, I'd face incredible expenses to pay for these drugs, up to $120,000 a year. Our Government has to look at the effectiveness of oral drugs vs. IV drugs that aren't as effective despite the cost. We shouldn't be putting a price on human lives, when we can save them.
Robert - Toronto, Ontario
I was diagnosed with chronic lymphocytic leukemia in 2005 at the age of 35.
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Since then I've had 5 separate chemotherapies. My first chemotherapy I had to pay for part of the treatment as OHIP would not cover it and neither would my insurance. The drug cost $35,000, which we paid, and lasted me 2 years without symptoms. That drug is now approved as first line treatment, but it was approved 1 year after I needed it. As of February 14th this year, I ran out of IV chemotherapies that could work and were covered by OHIP or local trials. In fact the last 4 chemotherapies did not work at all. They prolonged my life, but did not stop the progression of my cancer. During those treatments I also needed to buy Neupogen and Neulasta which totaled between $8,000 and $10,000. These drugs were not covered by OHIP, but were mostly covered by my insurance. Recently it was discovered that I have what is known as a 17p deletion which prevents most chemo from working. There is only one alternative left for me. It is an oral drug called Imbruvica (Ibrutinib). It is approved in the US, but not yet in Canada. I have found a trial in Columbus that will accept me. They will pay for the pills which cost $275/day, but I have to pay for travel, and all of the other medical expenses. There is no coverage for this. Not from OHIP and not from private insurance. We have estimated it will cost about $75,000 for the first year. We are fundraising right now as that is far, far more than we can afford. I have been on disability for 2 years. We don't have much income. Had this drug been approved here in Ontario, we would have needed to pay $100,000 for the year. I'm not rich, I can't afford that. My goal is to see my son become a man, I need 8 more years. Our medical system is supposed to cover everything... so why doesn't it?
Jeff - Ontario
Hi my name is Jeff. I was diagnosed with prostate cancer in 2007 at the age of 43.
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My cancer was stage T3B gleason 7. I had to be on hormonal therapy for a little over a year at $1,000.00 every 3 months. Luckily I was covered through my employer insurance. But I have recently left work due to side effects from the cancer and will only have coverage for 2 years. So I am not sure how I will afford this therapy in the future when I have to go back on it.
Jennifer - Scarborough, Ontario
In April 2011, I was diagnosed with Oliodendroglioma.
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With my husband, my mom and my brother in the room, my first thought went to the ages of my kids when I would pass away. One would be 15 years old and the other 14 years old.
Since then, my oldest child (then 5 years old) shared the story of her mom’s ‘sickness’ and asked her teacher if I will die. My youngest (then 4 years old) has seen me during a grand mal seizure and with tears streaming down his face, tried to pry the paramedics away from me in fear they were hurting me.
There will be a time when I require oral chemotherapy to treat my brain cancer. Learning that I may need to go through financial hardship to maintain treatment is an added stress my family should not have to have to endure.
Cancer is cancer. Accessibility to treatment should be made available to everyone regardless of what type of cancer it is and where you live.
Leena - Northern Ontario
My name is Leena and I live in Northern Ontario, I was diagnosed with terminal Glioblastoma Brain Cancer Sept 2012.
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I had surgery to remove the tumor and after six weeks I was prescribed Temodal along with other med's and radiation. Nobody told us how expensive the drugs would be. I burst into tears at the pharmacy and thought well this is my death sentence because there was no way we could afford the meds. We were told to apply to the Trillium fund which we were accepted but with being self employed we had to pay the deductible but was much less than the cost of the drugs. We also were paying out 300.00 per month for my husband's heart medications as well!! There is the liquid Temodal and I requested that but was denied. This was a double whammy as my husband worked out of town with our business and I worked at home at this point my husband had to quit working out of town and stay home which cut our income drastically. I cannot be left alone because of the seizures I had and fear of more seizures which also means I couldn't drive. This has taken a toll on both my husband and myself. I suppose he could go back to working out of town but if I have a seizure during sleeping I will die. All of us cancer patients need to be treated equally regarding med's. Funny how the expelled senators have this amazing drug plan and they would receive their medications no questions even though they have lost their jobs and here we struggle with OHIP that will not pay ours, where is the equality. I emailed all members of the government but only one replied who said that when it came time he would fight for me? What the hell, I need help now just as many others do. I will help as long as my health holds up.
Lynsey - Guelph, Ontario
My name is Lynsey and I live in Ontario. I was diagnosed with brain cancer at the age of 23, a couple months out of university.
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I was lucky to be working so soon after graduating (not everyone is that lucky!) and thankfully had insurance through that job. They covered 80% of the cost of my treatment (Temozolomide) but even with that, the cost was still too much for my husband and I to afford.
We did significant amounts of fundraising and applied from Trillium support, which gave us some money towards Temozolomide, but nothing towards the five other medications I needed to be on while taking chemo.
This was in 2012 where I was only taking the medication five days a month, for 12 months.
While we pay of the debt from that year of treatment, I am aware that if I need to go back on Temozolomide, it will be a more aggressive dose – every day, for a year. Increasing all of the costs even more: we estimate it will be more than $100,000.
We never know what might happen with work and school for me and my husband and the cost of this could easily be far too much for us to bear. Especially when I should be focused on beating my cancer.
Lisa Machado - Toronto, Ontario
My name is Lisa Machado. I have an uncommon form of leukemia. The medication that I need to keep me in remission costs almost $4500 per month.
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Up until last year, I was involved in a drug trial, which covered the cost of my drug. When the trial abruptly ended, I remember calling my husband and asking him how we were ever going to be able to afford it. As a patient group leader, I had heard many stories about patients having to get a second mortgage on their home, or their spouses having to get another job in order to pay for their cancer drugs, and now, suddenly, I was the one facing this financial burden. As we navigated the world of Trillium and insurance coverage, it was stunning how complicated it all was. One night, my husband and I spent more than an hour with his employer's health plan administrator trying to determine if such an expensive drug would be covered at all. It was very daunting. Fortunately, the company that makes my drug created a program under which my drug would be covered. I am very grateful. There are many, many people with cancer who aren't so lucky. Hearing that you have cancer is devastating. Finding out that you can't pay for the medication that will make you well is catastrophic. It doesn't have to be this way.
Laurelea Conrad and Stephen Ferguson - Toronto, Ontario
My name is Laurelea. My husband Stephen is a kidney cancer patient.
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Kidney cancer is unresponsive to chemo or radiation and the only treatment after surgery is targeted therapy taken orally at home. We live in Toronto. When Steve was first diagnosed, we were both shocked to find out that his cancer treatment drug Sutent was not fully funded in Ontario. We applied to the Trillium drug program and after 8 weeks were told that our deductible would be approximately $400 PER MONTH or higher depending on the dosage. We pay that $400 monthly deductible on top of all of the other costs of having cancer -- the loss of income, the parking fees, the complementary therapies, etc. Had we not qualified for the program our costs for his oral treatment would be more than $100,000 a year compared to zero dollars if he was prescribed in-hospital treatment. Our friends, family and neighbours are shocked to hear that Ontario does not cover Steve's cancer drugs just because they are pills.
This treatment has given us hope. We know it is working. But the additional financial burden seems so unfair. What can be done to fix this?
Sincerely,
Laurelea Conrad and Stephen Ferguson
Deb Maskens - Guelph, Ontario
My name is Deb. I live in Guelph, Ontario. My cancer medications were covered 100% by my private insurance, but many patients do not have the luxury of 100% drug coverage through their employer.
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I could not ever leave this employer because I am now uninsurable (stage IV cancer) and cannot lose these drug benefits. If left to Trillium, my husband and I would pay thousands in deductibles.
