+ Reply
Log in or Register to participate in these discussions
Let's discuss...cancer drug access
02280482f39c0ab0d87377c0dab20a99-huge-se

Prescription drugs play an essential role in cancer treatment. Cancer drugs such as chemotherapy, hormone therapy, biological therapy, and immunotherapy work in different ways to destroy cancer cells, stop them from spreading or slow down their growth. Drugs are also being used to lessen, or relieve, side effects of cancer or its treatment.

The healthcare system continues to evolve and adapt to meet the needs of patients, but there are still significant gaps in care. Canadians with cancer may face drug access challenges.

Discussion Questions:

  • Have you faced challenges in receiving timely access to drugs for your cancer treatment?
  • Did you have to fill out a number of forms when trying to access your prescriptions through a publicly-funded program?
  • Did your private insurance company cover all your prescription drug costs?
34 Replies
Kuching
436 Posts
@Lacey_Moderator
I’ll start this off on a positive note. 1. My pharmacy calls me once a month to see if I’m ready for my next prescription. It comes the next day. 2. My oncologist did some paperwork to get approval for the targeted therapy drug I’m on. It’s expensive! I get the Ontario Drug Benefit, plus the Senior’s Co-payment Program, had to fill out one form for that, but my drugs have been free ever since. 3. I don’t have private insurance, just OHIP. Never had to pay for anything. No complaints here!

@Kuching Thanks for sharing! All feedback welcome

LucyK
52 Posts

@Lacey_Moderator. I have been on meds for almost 4 years. I live in BC. Fortunately I have Blue Cross that covers 70% of regular prescriptions. There have been a few other meds that were covered through organizations. My doctors filled out and submitted the paperwork so there was no cost to me. The doctor handled paperwork to apply for a specialty medication that Pharmacare covered 100%

@LucyK- Great to hear! thanks for sharing

@Lacey_Moderator No problems with access, overall. My benefits plan covers 90% of costs and there was never any question about processing my cancer drug claims, so all good on that front.

DHPC75
15 Posts

@Lacey_Moderator
As a senior in Ontario I haven't had any problems to date. All my drugs so far have been covered, other than my senior co-pay. No issues.

David B
20 Posts

@Lacey_Moderator Most of it has been smooth, aside from my first drug reaction. Seems the reaction was expected as they started it on me in advance to check.

I'm on a hormone therapy. That requires an exception. I have to go to my local hospital pharmacy to pick up the shot. Then make arrangements with the manufacturers nurse to come to my place to give it. The exception was during radiation treatment, I had to pickup the injection in my home hospital before departing, then a chemo nurse gave the injection at the distant hospital.

None of the issues you mention, just an unusual arrangement for that prescription. Seems because it requires special training to administer.

GHO
10 Posts

@Lacey_Moderator I live in Alberta and have an individual insurance plan through Alberta Blue Cross.

My treatment plan includes an expensive injection to support my white blood cell count after each infusion. My oncologist filled out paperwork and directed me to further support from the drug access coordinator. It was suggested that to avoid using up all my coverage I could purchase a supplementary non-group plan(which comes with a waiting period). In addition, I was able to get some support on a compassionate basis through a drug program.

I am grateful for the support that I have received. However, I do wonder about the experiences of others who do not have any supplementary drug coverage. My hope is that there are enough compassionate resources for them to get the support that is needed to heal.


celticjoys
10 Posts

@Lacey_Moderator

I was very fortunate that my oncologist filled out and submitted a request for a Special Authority from BC's Fair Pharmacare so all my chemo drugs and the anti-nausea meds are all covered and count towards my annual deductible. I also learned of a group which will assist with the coverage of my very expensive anti-nausea med Akynseo! I have to admit I was shocked at the cost of the Akynseo - $500 for 3 doses!

Soul17
1 Posts

@Lacey_Moderator Have not faced any timely access to the drugs for my cancer treatment, in fact they were very fast to start my treatments. I had no forms to fill and my insurance company did not cover all my prescription drug costs but the provincial plan did cover many of them. I have access to all the drugs I need.

@Lacey_Moderator At the beginning of my chemo, I had to give myself grastofil injections which I was told were costly. My Oncologist contacted someone who contacted me and my work benefit department to see how much was covered and whatever wasn't they would cover. Turns out that for the first prescription my benefits and BC fair pharmacare took care of the cost. Then after that the medication was totally covered by fair pharmacare.

My first year of Letrozole, my Oncologist gave me the prescription and I was picking up the prescription from the Abbotsford Hospital Pharmacy where I received my chemo. From then on my prescription was given to me by my family Doctor but I still got the prescription filled at the Abbotsford Hospital Pharmacy but it was mailed to me. And the only issues that I had was once with my Letrozole refill that was supposed to be mailed from Abbotsford Regional Hospital and Cancer Center Pharmacy but they neglected to mail it. It was during the flood that they neglected to mail it and I didn't have the option to go get it. I asked my local Pharmacy if they had any and did put some on hold for me. My medication (along with others I'm sure) ended up being delivered from the Abbotsford Hospital Pharmacy by air to my local Hospital. Even though I have been discharged from BC Cancer, I can still get my prescriptions for free from the Abbotsford Hospital Pharmacy.

Since the beginning of Covid, my prescription refills are a phone call appointment instead of in-person. So much faster if it's a refill for an existing medication.

muumi
22 Posts

@Lacey_Moderator I have not needed as many drugs as some other people, but when I received my diagnosis one of my first thoughts was, I'm glad that I developed cancer when I was just over 65. I have no private insurance, and I am very grateful for the Ontario Drug Benefits plan for seniors which has covered almost everything I need. Oddly, the only prescription medication not covered has been the super potent (but not particularly expensive) antibiotic that I had to obtain from the hospital pharmacy and take before surgery. Inexplicable!

Daylyn52
8 Posts

@Lacey_Moderator The only issue I have is my employer drug plan does not cover 100% (don’t know why) so I am always out of pocket, and this is really adding up, especially since I have yet to be approved for LTD.
I will have to pause chemo, as I can no longer afford that extra cost.

DonnaL1959
43 Posts

@Lacey_Moderator My husband has private insurance through work - but he's on disability leave and the insurance company is trying to kick him off the plan and send him back to work. The plan covers my Avastin which has amounted to $6000 so far - I don't know if OHIP, Trillium etc will pay if he gets kicked off. There is no way he is fit to work right now. I'm 63 so not a ‘senior’ yet for drug benefits. What really annoys me is in the USA - oncologists can prescribe what the hell they want/think will help. Here, they have to jump through a lot of hoops to ‘qualify’ us for certain treatments. My oncologist is always telling me ‘My hands are tied’ when I bring new research to him that might help me. He's also said, “In the USA it's the wild west of treatments, including complementary therapies etc.” So my doc isn't ‘allowed’ to prescribe some things that might help save my life; in the USA a lot of patients bankrupt themselves to survive - but they survive! Why are we so far behind the USA in metabolic and germline treatments that might save our lives? That's what really annoys me.

Smarti
10 Posts

@Lacey_Moderator
At first, our private coverage was sufficient to cover drug costs, but once my husband’s cancer progressed we did run into problems. The addition of one drug in January depleted our coverage ($5,000/yr) in less than 3 mo. Our cancer centre has a drug reimbursement specialist and she was able to get the pharm company to sponsor this drug cost but up until then, it was a real struggle. Just two of his prescriptions were costing $2100/mo. OBD and Trillium were not options at the time as he is 56. His palliative Dr and reimbursement specialist filled out all the forms.Now that he is receiving home care, we qualify for OBD and almost all costs are covered. Fortunately, our private plan is covering items that were not such as lift chair.

The two biggest issues we’ve run into

  1. some treatments were not an option because OBD does not cover them I.e. injectable med for bone cancer that a nurse could do at home so we have had to stop treatment.
  2. our local pharmacy continued to charge his meds to our private plan instead of OBD resulting in me having to pay the insurance company back $$$. I have been struggling to get this sorted out since May. The pharmacist was not pleasant to deal with but will resubmit those costs to OBD and reimburse me….or so they say. Still waiting ☹️

@Lacey_Moderator My mother who passed away in Dec 2020 was diagnosed with Endometrial cancer in 2019. She went through 2 different chemo protocols (iv type) before an oral pill was suggested. One type of oral pill was free, the other she would have to pay for. I was under the impression that her Oncologist was doing the paperwork for the free one. She ended up in the hospital (which ended up being the day she passed away) and received a phone call from her Oncologist. I took the phone call and asked the questions that my mom wanted answered. To my surprise the Oncologist said she didn't financially qualify for the chemo pill. I didn't question as my mom was right beside me and would hear the conversation. Since when do you have to financially qualify for a “free” pill? Not sure whether the Doctor did the paperwork for the wrong pill as that was the last conversation I had with her Doctor.

My mother wasn't very forthcoming with information about her health and I only went to one Oncologist appointment with her. I'm not sure whether my mother chose not to discuss medical stuff with me to protect me or she thought she told me when she didn't or maybe a bit of both. I was going through my own diagnosis around the same time.

law1
742 Posts

@Lacey_Moderator and Hello to All who are reading this post…..

I have had wonderful docs at my BC Cancer Centre - Victoria, who have written prescriptions regularly and the drugs worked when I had cancer…..I was so grateful. I am cancer-free and no longer require any drugs related to that disease.

I paid about $400/monthly for drugs and topical anesthetic for horrid mouth pain to allow for eating and swallowing for the 20 minutes numbness lasted.

However, I do have other drugs I need to take for my blood pressure, my underactive thyroid, and anti-depressants/anti-anxiety.

Unfortunately, there are no available doctors nor walk-in clinics near me any longer. I must say it is scary and frustrating to search and beg to find a doc who has the time and desire who will renew (not refill) Rxs.

I am scared and disappointed by the demise of the Health Care system in BC and in Canada.

nel
34 Posts

@Lacey_Moderator
I am getting my cancer care in BC Cancer Center in Surrey.

I received Chemotherapy (Paclitaxil and Carboplatin) covered by MSP and Dexamethazone and ainti-nausea were covered 80% by my extended benefits. Chemotherapy Treatment for my Endometrial Cancer - High Grade Serous Carcinoma did not worked. Some tumors remain the same and some even grew bigger in size. We stopped the treatment at fourth cycle out of six.

The next best option for me was the Immunotherapy Treatment - Keytruda (infusion) by Merck and Lenvima (targeted cancel pills) by Eisai, both were not covered by my extended benefits. I was able to get compassionate funding for Lenvima as long as I pay for Keytruda. Unfortunately, Keytruda is only available in the US of America. It just passed their clinical trial and just got approved by FDA. It is not available in BC Cancer Center. I had to pay for Keytruda - $10,266 per session, I had three session so that's a total of $30,798 for my infusion. Private clinic's initial fee was $225 and the next two sessions were $125 each. That's a lot of money that I had to take from my cash mortgage - now my monthly mortgage is higher!!

My first Immunotherapy session was February 14, 2022 and I stopped the treatment on March 29, 2022. I had a total of three immunotherapy treatments. Lenvima got so toxic that's the reason why we have stopped the treatment immediately. Keytruda infusion on the other hand is still doing wonders on my body. Tumor markers are lower and CTScan result for lessions and tumors smaller. I am on treatment break since to spare my body from more toxicity and to give me quality of life. My next checks and tests is in October.

I am not declared cancer free. In fact, I have a second cancer - Estrogen Positive Breast Cancer and I just had a left breast full mastectomy two weeks ago and I will know the next step or possible treatment in two days. So stressful!!

My oncologist said Keytruda infusion is still working well. Should my tumors grow back, we will do Immunotherapy Treatment again - that may mean, I have to pay for it again.

While I am on treatment break, I am seeing a naturopath specializing in cancer. Their fees are expensive. My extended benefit covered only $250. An hour of naturopath consultation is $300. I had multiple consultations already. I am receiving a high dose of Vitamin C infusion weekly and each time I pay $160. I have had a total of 16 so far. In addition to that, I am paying for my mistletoe injections - one box with seven vials is $240. My injection is every four days. I am taking Ashwaghanda, 5-HTP and Vitamin D supplements. That adds up!!

I am a single mother supporting two kids who are still in the university and I am paying a higher mortgage, not to mention the inflation!! I have been working full time during my cancer treatments, it is really hard but I need my full salary so I can support myself and my two children. I don't work during my worst days. I have maxed out my sick days and almost out of vacation days. Short Term Disability is not available to us. Long Term Disability pays only 55% of my salary and I can't afford that. I have not tapped into that yet and I hope I won't.

Daylyn52
8 Posts

@nel I am sorry you’re not covered for Keytruda. I am covered in Ontario (directly through Merck), but I have triple neg bc, so maybe that’s why. I would never be able to pay out of pocket for this and am in fact taking a pause with chemo because of the costs associated with the other scripts.
I wish you well, this journey is difficult enough, never mind the added costs of life saving drugs that we have to pay out of pocket for. People think Canada is so awesome with drug coverage, but then they get sick and realize its not that great.

Jonaleeca
20 Posts

@Lacey_Moderator I had no issues with drug coverage. I believe OHIP covered the chemotherapy, iv steriods, and the Zoledronic Acid I receive every three months at the cancer clinic. I told my oncologist that my husband's drug plan through work had a limit of $2500 per person per year. The Filgrastem shot that I received the day after each chemo treatment was $1,600 each!! Unbeknownst to me, someone at the cancer clinic filled out paperwork and the next thing I know, all of my prescriptions during the time I was in treatment (Jan - Sept) were covered 100% by the Ontario Drug Benefit plan. Once the radiation oncologist signed off on my case, ODP stopped coverage and my husband's insurance took over. I am thankful that I mentioned the drug limit to my oncologist and eternally grateful to those who work in the cancer clinic and who know how to help in this area. It took a big stress off of my husband and I. A friend of mine who was receiving chemo at the same time as me (for a different cancer and in a different city) was not as lucky and had to pay for a lot of his prescriptions. He ended up not filling some of them because he could not afford them. He was in a lot of unnecessary discomfort and pain. Sadly he is back in treatment and now has a port. With that, he was eligible to have prescriptions covered.

DHPC75
15 Posts

@DonnaL1959 ‘A Short Primer on Why Cancer Still Sucks’, by David Stewart, MD, is a recently published book written by an oncologist at the Ottawa Hospital. He has also worked as a researcher both in the US and Canada. He spends several chapters explaining (and expressing his frustration) why cancer research is so slow and expensive, why drug companies are often reluctant to submit new drugs for approval in Canada's tiny market, and why provincial approvals often take so long. He also offers some solutions to these issues and looks into the future of cancer research and treatment. The book also covers nearly all current cancer treatments and the importance of nutrition and exercise both before and during cancer. Don't let the cheesy title fool you: the book is a great read if you're interested in delving a bit into the weeds of cancer treatment. My take is, if we want improvement, we have to individually and collectively keep lighting fires under our uninterested politicians and dozy regulators.

DonnaL1959
43 Posts

@DHPC75 I agree 100%. I've read a lot about cancer research and I'll get this book you suggested from the library. I follow Jane McLleland's protocol for ovarian cancer from ‘How To Starve Cancer’ which uses cheap off-label drugs, supplements, diet, exercise, saunas, other integrative treatments along with mainline drugs/chemo/surgery etc when required. I have the same approach - integrated. The annoying thing is finding a functional MD to prescribe the off-label drugs (in my case, vermox and metformin mostly) thank God I did. I take a ton of supplements recommended by Jane and also Chris Wark's ‘Chris Beat Cancer’ and I juice organic veggies 2-4 times a day. I have to cross-check each supplement against my cancer tumor type and my chemo (Taxol and Avastin) it's a LOT of work. I hate feeling fairly alone in this since my onc. has nothing to say about my plan (he can't legally comment - what BS - unless he sees dangerous interactions.). But I'm fighting for my life so it's worth every hour spent on research. My nurses do my weekly blood work and say, “Keep doing what you are doing”. When I say, It's mostly diet and supplements - they just say, ‘Hu huh’. Everyone is afraid in Canada to go outside of the lousy ‘standard of care’. It's criminal.

DHPC75
15 Posts

@DonnaL1959 Hi. The author of ‘why cancer still sucks’, along with several international experts, has created Life-Saving Therapies Network. Their mission is ‘to enable patients with lethal diseases to have faster access to better therapies’. If you Google the name you will find their website. It looks quite interesting. Worth a look.

Cea
51 Posts

@Lacey_Moderator

Three of the drugs are covered so that's good. The Grasofil (?) - supposed to be covered by my plan - no. My husband went to bat and got it covered by his plan but it is a different amount every time at Shoppers. I don't know what the problem is. The perjeta is $8000 out of my pocket. Fortunately my health care through my chamber has a cost plus component so I'll write most of that off as a business expense. It doesn't hurt quite so much but knowing the lady beside me gets it free is a bit mystifying - there's some threshold I can't figure out.

@Lacey_Moderator
Great topic.

Much of my involvement in advocacy stems from challenges in accessing drugs. The disparity across the country is amazing. A National Pharma-care program would go along way to leveling these differences.

I was given compassionate access to my initial immunotherapy - $250,000 for a year - by the drug company. Interestingly I have since discovered that given my EGFR #LungCancer mutation it is quite controversial. I now have an acquaintance who is on the same drug for a different cancer. Since his usage is an off-label use though supported by research the drug is not covered.

My second go-round was the real education. I was put on afatnib as a “better” drug osimertinib was not funded yet by BC Cancer. The drug was approved by Health Canada and was in pCODR for consideration for funding. Once the decision to fund was made then it was passed off to the panCanadian Pharmaceutical Alliance to negotiate the price with the pharmaceutical company involved. Once this was settled, BC Cancer put a provincial funding rule in place that any one who had been on afatinib for more than six months would remain on afatinib. And guess what. Eight months in so my application was denied. So here I am 3 and half years later advocating and talking about the challenges of drug funding.

I met with my MP and MLA to let them know that there was a wave of very expensive drugs (immunotherapies and targeted therapies) coming that would strain the system. And then covid hit and the disaster that is our health care system is cracking and crumbling in all sorts of places that cause problems far beyond these drugs. How do you even get them if you can't get a family physician? Or if you make it to the cancer system there are no oncologists to see you?

I was a freelancer for many years so have no private insurance and am dependent on the Fair Pharmacare in BC. It is the OTC drugs to manage side effects that are a challenge. I recently discovered that I can get them prescribed which since I'm paying for them anyway goes to lowering my deductible. It is these small twists that get shared in support groups that make the financial toxicity of cancer bearable.

Angus

77Bronco
141 Posts

@Lacey_Moderator

i have pancreatic neuroendocrine cancer. I have lanreotide injections once a month not covered by ohip or drug plan. Here in Ontario the drug is 4600.00 a month. I have been on it for over two years. My oncologist sent my info to bayshore and I was able to get the drug under compassionate grounds Ever since. Now I am going through LU177 PRRT treatments 4 in total at 35,000 per treatment every 8 weeks. For a total of 140,000 dollars. Also not covered. Victoria hospital in London pursued the pharmasudical company and were able to get it on compassionate grounds as well. The only thing that is not covered is the amino acids i need to have during treatment to protect my kidneys during treatment and that is 215.00 per treatment. I figure it is a small price to pay considering the costs of my other medications. I am thankful to live in Canada as the lanreotide alone in the states is between 40,000 and 50,000 per injection depending on where you live there. I have acquaintance's on inspire that have told me the costs down there of some of their meds. wow😮

We pay all our lives into ohip and drug plans and when we need the drugs to fight our diseases we have to get them on compassionate grounds From the manufacturers. However i am thankful i do not live stateside. And I am thankful to get them on compassionate grounds.

@Daylyn52 and others
I am sorry you find yourself in this situation. Is your oncologist aware ? Have you talked to the pharmacist in your cancer center about options for coverage though manufacturer or others?

I wanted to share this information also from cancer.ca on financial options in case any are applicable for you.

https://cancer.ca/en/living-with-cancer/coping-with-changes/finances

Lianne

Bluenoser13
80 Posts

@Lacey_Moderator

Like some others, I’m on hormone therapy and a quarterly shot. No issues with either. They deliver my pills every month on a day I select.

The injection I get from the pharmacy and my oncology nurse administers that during my 3 month appointment.

No costs so far. 🤞

Daylyn52
8 Posts

@Lianne_Moderator I just found out yesterday that my onco is on some sort of “leave” so now I’m left hanging. That being said, it looks like I’m chemo-resistant so won’t be having any more of that treatment. I have tnbc, the tumour has doubled in size since Feb.
thanks for the link, if any further costs come up I will check to see if I can get help. I’m having a difficult time getting approved for LTD, as they don’t believe I have never had breast cancer. Long story I won’t bore anyone reading this with, but suffice it to say, I do not have an income until this is approved, so won’t be able to make the 5 hour drive to the cancer centre for the surgery anyway. Rental car, hotel, meals, etc. all add up very quickly. Every time I go it costs me about $800. I realize I can write this off on my taxes, but that doesn’t help me in the present.
I am having a difficult time with all of this and have requested a therapist to speak with and hoping someone at the cancer centre can help me as well.

Sassy53
17 Posts

@Lacey_Moderator
Are Immunotherapy drugs free in BC ?

+ Reply