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Guest Blog: Ontario Patient Faces a Maze of Coverage

(Patient has advanced kidney cancer requiring sunitinib (Sutent), an oral chemo drug approved on the Ontario Formulary, but not fully funded for those under 65 in Ontario.)

My wife's benefits were slashed once again "unofficially" due to my Sutent costs. She was slashed to $3000 yearly which doesn't do much for the Sutent costs. I also have Trillium as a secondary coverage - for many years but never really ever used it. Last month’s Sutent cost left me with a payment over $1000 of which I submitted the receipt to Trillium. As for the EAP program it says 100% coverage that I qualified for Sutent.

I called in for refills this morning and was told no coverage at the pharmacy level but send in more receipts for things like blood thinners, blood pressure & pain management. I called Trillium since I felt I met the requirements they explained so far and now they want a letter from my wife's benefit's company saying we've used up the coverage. I sent a letter in the spring explaining the coverage reduction from them. They know I covered the balance of the latest Sutent prescription because the benefits only covered approximately $3000. None of this was good enough and they want another letter saying the same from Winnipeg and I also have to wait another 7 - 10 business days for coverage after I get this all done. They have all this already but of course nothing with the precise numbers on paper which they already know when it's put through at the pharmacy level. Now this is nothing more than red tape run around at best.

They cry constantly about hospital costs and un-needed visits, well where do they think I'll be going for higher cost care because of this. Unbelievable. And best of all it takes Trillium numerous weeks to months to cover the receipts is what I'm told even though I'm not a new client and have EAP approval for coverage.

Name withheld to protect the patient.

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Guest Blog: Family in Ontario Calls Upon Health Minister for Action

The following letter is one of many that have been sent to Health Ministers and elected representatives in Ontario and Atlantic Canada. This letter is published here with permission of the family. Names have been withheld to protect the privacy of the patient and her family.

September 11, 2015

Honourable Ministers:

My name is (Private Name Withheld for Privacy) and I live in Guelph, Ontario.   In July of 2012 my wife of 25 years, was diagnosed with a rare form of Leukemia called CML.   As I am sure Honourable Dr. Hoskins knows, CML is a leukemia such that white blood cells with an abnormal gene multiply very rapidly and squeeze out the normal while blood cell.  The leukemic cells lack the ability to fight infection.  Approximately 15 years ago the vast majority of the patients diagnosed with this disease died within a few years.  The last resort for these patients of the past was a very costly bone marrow transplant and chemo/radiation treatment.   But most died anyway.

In the last 10-15 years a notable group of Doctors, specifically Dr. Brian Druker of the University of Oregon, pushed the development of a drug commonly called Imatinib and also conducted clinical treatment trials.  His research and persistence created the first cancer drug in the world to target just the cancer cell and not healthy cells.   His research and work, along with many others, including the very highly respected Dr. Jeffrey Lipton at Princess Margaret Hospital, have dramatically changed the treatment for this disease. Today most CML patients can live a relatively normal life, and even expect the same life expectancy of those who do not have CML.  The new drugs are not a cure, just a very effective treatment.

It is estimated the work of Dr. Druker, Dr. Lipton and other clinical cancer researchers has saved 100,000 lives of people diagnosed with CML across the globe.

Ironically enough, my wife's mother also had Leukemia (another type), and almost died from the disease a number of years ago.  I was with her when the Haematologist in Kitchener told her she would not last more than two months.  In fact, she did survive, almost 20 years now, after receiving life saving bone marrow transplant at Victoria Hospital in London.  She was in hospital for the better part of a year.  For our young family at the time, having Nana survive and prosper was indeed a blessing we are still very thankful for today.

My wife's mother's treatment was covered by the Ontario medical plan.  Still today, treatments for cancer inside the hospital, including intravenous drugs, radiation and bone marrow transplants are covered by Ontario's medical insurance.

My wife's cancer treatment, which is an oral medication taken once per day, is NOT covered by the Ontario medical plan.  Apart from check ups from a very caring Doctor at the Balsillie Cancer Treatment Centre at Grand River Hospital <name withheld>'s only treatment is an oral medication.

If <name withheld> and I lived in most other provinces her treatment would be fully covered.  As it is in Ontario we were able to get a Trillium subsidy for this medication, however we still have to pay 4% of our family income as a deductible for it. While we are able to afford it, it is still a very large financial obligation for our family.

If <name withheld> were to receive treatment in the hospital via intravenous drugs, radiation or bone marrow transplant this would also be fully covered.  It is surprising to see that a more costly, and less effective treatment, would be fully covered.

As a society we do not tolerate discrimination.  As a society we have become more aware of how we discriminate, and then make efforts to correct.  We do not tolerate discrimination in our health system based on someone’s race, someone’s sexual preference, someone’s income, someone’s IQ.  Why do we tolerate discrimination based on the type of cancer they have?!!  Oral medication or intravenous medication?  Why would we discriminate and not publicly fund the treatment because of how it enters the body?  "Intravenous cancer treatment?  We have you covered!"  "Oral medication for your Cancer?  You're on your own!" says the Ontario Government.  It's fascinating to me that I find myself in the position of even writing this letter!

A more effective treatment for treating CML is taking an oral medication.  A more effective treatment for treating CML is by outpatient care without incurring the cost of treating via intravenous medications, expensive radiation or even more expensive bone marrow transplants.  

"So let's make the patient pay, instead of paying via our socialized medical plans." said someone.  Did the bureaucrats even give this some thought?  Or was it just one of those things that slipped through the cracks when some very incredible people changed the face of how cancer is treated in the world?

As I think about this more, the situation must be the latter, whereby it just slipped through the cracks.  There is no other logical explanation that I can think of.   Honourable Ministers, I know you must be aware of this inequity.  I'm sure Dalton McGuinty was aware of this inequity previously.  Honourable Ms. Wynn, you are now aware of this inequity.  Why has it not been corrected?

According to the Cameron Institute, access to oral cancer medications via the Ontario Medical plan would cost the province $30MM-98MM per year and lead to a 17% reduction in chemotherapy unit costs.  It is therefore also a financially prudent expense, especially when considered against the Ornge and energy plant wastes we have seen in this province in recent years.

As a taxpayer in this province I am demanding equal access to cancer treatment for all.  Whilst our family may be financially capable of paying the deductible there must be many others avoiding the more effective treatment solely because of your discrimination.   It is devastating enough that a family member has a life threatening disease, let alone the significant financial hardship and stress it can bring upon a family because the person has an oral treatment instead of intravenous.  This discrimination needs to stop now.

The most important person in the lives of me and my three children is my wife <name withheld> and their mother.  We are so thankful for the treatment providers today and the researchers of the past.  Without them we wouldn't have her today, three years after she was first diagnosed.  Of course I would be happy to pay whatever I had to for an eternity, but to be discriminated against because of the type of treatment she receives is just not acceptable to me any longer as a taxpayer.

I support the Leukemia Society, the CML Society and the CanCertainty Coalition in their effort to stop the ludicrous nature of this policy in Ontario.

Please act now and eliminate this discrimination?

Best Regards,
(Name Witheld for Website Purposes. Family is willing to meet with decision makers as needed and can be contacted through: info@cancertaintyforall.ca).

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One Year Later: Progress, but no Action yet…

Thank you for your support of the CanCertainty Coalition of 35 cancer patient organizations and our focused campaign to have take-home cancer drugs (administered at home) funded on par with intravenous drugs (funded in hospitals). Our campaign has been in the news a great deal over the past year. If you have missed any of the television, radio, or print coverage, please click here.

The purpose of this blog is to provide a very brief update and to ask for your support in one of two ways.

First the updates by province:

Ontario
One year ago (May 8, 2014), Cancer Care Ontario held a full-day meeting entitled “Think Tank: Enhancing the Delivery of Take-Home Cancer Therapies”. This was an excellent meeting with broad consensus that the current reimbursement systems are inequitable, complex, and lead to many issues including delays in treatment, financial burden, and patient safety. The Report from that meeting was issued in December 2014. Since then, our Coalition has been urging the Ministry of Health and Long-Term Care to ACTION this report and put together a steering committee to address the many issues identified. To date, there has been no firm commitment to action.

Can you help? Please consider a letter, phone call, or email to your MPP in Ontario asking your MPP as your elected representative to contact the Health Minister, Dr. Eric Hoskins and urge that action be taken for fairness, equity, and patient safety for all cancer patients in Ontario.

Nova Scotia
In October 2014, as a result of the CanCertainty Coalition’s efforts in Nova Scotia, Health Minister Leo Glavine publicly stated to the CanCertainty Coalition, and to the media, that his government must address the discrepancy in cancer care with respect to take-home cancer medications.  The Minister also committed to reporting back to the coalition on next steps.  Over seven months have elapsed and we have not yet heard from the Minister on a path forward.

Can you help? If you live in Nova Scotia, please consider a letter, phone, call or email to your MLA or directly to Health Minister Glavine requesting action on this issue.

New Brunswick, Newfoundland and Labrador, and Prince Edward Island:
Our Coalition continues to seek patients and healthcare professionals who are willing to take this issue forward with us in each of these provinces. If you can help, please contact us at: info@cancertaintyforall.ca.

Support our Campaign

And lastly, if you do not personally feel comfortable contacting your Provincial Representative but want to support the campaign and our efforts to resolve this issue, please consider making a small donation to our CanCertainty Campaign Fund. Funds allow us to reimburse patients for mileage when speaking to government and/or the media, and to continue our efforts to keep the issue front and centre.

We appreciate everything you can do to help us spread the word. Together, we have made an enormous impact, and together we WILL achieve CanCertainty for All Canadians!

Thank you.
Deb Maskens, Bob Bick Co-Leads,
CanCertainty Coalition

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“Will that be for here or to take out?”

For here or to take outAcross Canada, the price of a cup of coffee is usually the same whether you choose to drink it in the coffee shop or take it with you. Unfortunately, the same is not true for cancer therapy.  And, unlike for a casual cup of java, the stakes are much higher. Depending upon your province, taking cancer drugs “to go” can cost patients thousands of dollars. And increasingly, cancer patients simply don’t have the choice of an in-hospital “for here, please” alternative for their type of cancer.

Given the choice of equally effective cancer treatment in intravenous or take-home formulation, 53% of Canadians surveyed[1] showed clear preference for take-home medications. Indeed, these “take-home” oral and injectable medications will become the treatment of choice for most cancers – not as a convenient alternative to in-hospital care, but as THE standard of care – and for some cancers, the only form of treatment. Reports show that up to 60% of new cancer drugs in the pipeline are take-home medications.[2]  

Infographic

Mind the Gaps: Expectations vs. Realities for Many Cancer Patients

How Canadians expect their cancer system to work for them may significantly differ from the reality they may encounter. Depending upon the province, patients may be surprised to encounter five gaping holes in their provincial cancer systems:

1.  Completely different provincial systems for IV and oral (or other take-home medications)

2. Widely different timelines and waiting periods to commence IV and oral cancer medications

3. Outdated paper-based systems in some provinces that, in 2014, still rely on hand-written prescriptions, mail and fax machines

4. Lack of ability to track and report on usage, effectiveness and side effects of all cancer drugs

5. Different levels of care: that not all cancer drugs are dispensed  to patients by oncology-trained professionals.

Gap 1: That intravenous and other formulations of cancer drugs would be funded the same.

The vast majority of Canadians (87%) surveyed expect provincially approved intravenous and take-home cancer therapies to be funded equally.  Unfortunately that is only the case in five of our ten provinces.  Access to take-home cancer treatments is vastly different from province to province. In some provinces (BC, AB, SK, MB) cancer treatments are funded equally: “the route of administration of the cancer treatment should not be a consideration for a different funding mechanism”.[3] Provinces such as Ontario and Nova Scotia do not primarily fund oral or injectable cancer medications. Patients needing take-home cancer medications fall back on a complex patchwork of partial assistance that may include their provincial drug plan (if eligible), private insurance (if any), manufacturers’ assistance programs (if any), fundraising (if possible), and personal savings and assets (if available). 

All the while, the patient’s neighbour next door is receiving intravenous cancer therapy at no cost, with no burden of income proof or onerous paperwork. Across Canada, the cost of a Health-Canada approved intravenous cancer drug that is listed on the provincial formulary, and used according to provincially-determined eligibility criteria, is administered without the patient paying any co-pays or deductibles. [4]

Gap #2: That Cancer Treatment Will Begin Within a Reasonable Period of Time

Most Canadians expect cancer drugs to be started quickly following an oncologist’s diagnosis and decision to commence treatment (92% expect to start treatment under 2 weeks)[5]. The reality is that is only true for patients who require IV cancer therapy. For intravenous therapies, cancer centres in Ontario, for example, are measured by Cancer Care Ontario on their ability to move the patient from consultation to treatment initiation within that 2-week window. No such measurement applies if the treatment involves drugs to be taken outside of the hospital.

For patients requiring take-home cancer therapy, the waiting time can stretch to 2 months and beyond, adding serious stress to an already-stressful cancer diagnosis. No data is available to track how long these processes take for an average patient. Each patient must face the byzantine maze of partial solutions and emerge many weeks later, almost miraculously, with an individualized solution to fund their drug according to their unique circumstances. Only then can they fill their prescription at a local pharmacy and begin treatment.

Gap #3: Outdated Systems that Still Require Onerous Paperwork

Outmoded patchwork systems still rely on faxes, mailed in forms, bureaucratic processes, and separate systems for ordering/approval and reimbursement of drugs.

Example: Ontario’s Paper-Driven System for Take-Home Cancer Medications

For the Physician:

a) For patients without private insurance, the oncologist must request access for the patient through the provincial drug program’s Exceptional Access Program (EAP), according to provincial eligibility criteria. Unlike the OPIS system for ordering intravenous drugs, this process is manual, requiring the oncologist to MAIL or FAX paperwork in for approval. If the request is denied due to error or omission, the paperwork must be re-submitted with additional information for case-by-case adjudication, which means even more delays to essential life-saving treatment.

b) Once the EAP approval from the provincial drug plan has come through by fax or mail, the physician might communicate that news to the patient, but sadly many patients return for their next appointment 6-8 weeks later still waiting for financial reimbursement to be finalized. Some patients, overwhelmed by their diagnosis, fail to meet with Drug Navigators or complete Trillium forms until the next appointment.

For the patient, following the diagnosis and decision to commence treatment:

a) The patient may need to book a meeting with a Drug Access Navigator (2/3 of cancer centres in ON have a Drug Access Navigator on staff specifically to help patients navigate through reimbursement mechanisms). In Nova Scotia, one Medication Reimbursement Specialist spends long days sorting out the paperwork for each case.

b) If the patient has private insurance, they may need to telephone to see if the drug is covered and to what extent. They must understand pre-authorization adjudication, co-pays, caps, and annual or lifetime limits. They may need to contact their employer for exceptional coverage allowances.

c) In Ontario, the patient must fill out forms for Ontario’s Trillium Drug Plan declaring not only their own income, but that of all members of their current household. This paperwork requires recent income tax returns for all household members, and, according to one patient who is a physician herself, is “seven times more complicated than filling out income tax returns”[6].  Young cancer patients who return home to live with their parents during treatment face bigger deductibles as their parents’ incomes are calculated into the overall expected household contribution.

Gap #3: That our Provincial Cancer Systems Would All Track the Usage and Effectiveness of Take-Home Cancer Drugs

A nationwide survey of oncologists and hematologists suggests that the inequities of funding of oral cancer medications may have a negative outcome on patients’ clinical outcomes and psychosocial quality of life.[7] Further, from a cancer systems viewpoint, the lack of integration limits some provincial cancer agencies from efficiently tracking and managing cancer drug utilization and measuring outcomes.  Less data means missed opportunities to strengthen and streamline the entire cancer system.

Gap #5: That all Cancer Drugs Would Be Dispensed to Patients by Oncology-trained Professionals

The point of care for cancer treatment matters. Cancer treatment, whether intravenous or through other formulation, requires expert oversight from all healthcare professionals from ordering to distribution.  In some provinces (BC, AB, SK), oral and take-home cancer medications are reimbursed at cancer agencies and through their regional distribution networks. In other provinces (MB, ON, and Atlantic Canada), cancer medications are dispensed through retail pharmacies that charge both markup and dispensing fees back to the province.

 For cancer medications taken at home, cancer patients have no less need of expert pharmacists to be assured of safety and receive drug-specific education for side effect management, adherence, handling, and safety.

While many might believe convenience of local dispensing to be a key factor, survey respondents reported that the place where they would expect to get the most accurate information about a drug’s safety was from an oncologist at the cancer centre (62%), followed by an oncology pharmacist at the cancer centre (23%). Only 7% of respondents felt that the most accurate information regarding a cancer drug’s safety would be realized at a pharmacist at a retail pharmacy.  

Unfortunately, in some provinces, any retail pharmacist can dispense take-home cancer drugs without specific oncology credentials or training in specific oncology medications. Sadly, some patients go without expert training and education. Basic safety instructions for safe handling (wearing gloves), storage (away from children, sunlight, heat), safe disposal,  and potential exposure to caregivers and family members can be missed.[8]

Conclusions and Recommendations

Canadians pay taxes with the understanding that those taxes contribute to healthcare that should be provided equitably, regardless of income, regardless of province.  Provincial Ministries of Health and Provincial Cancer Agencies have a responsibility to ensure that public funds are being dispersed fairly and without discriminatory practices.

In Ontario and each of the four Atlantic provinces, Health Ministries have allowed our cancer systems to fall behind the evolution of cancer therapy. Outmoded systems arbitrarily divide cancer patients into two groups:

  • Those who will be treated without question or income testing
  • Those who must jump through hoops, face delays in treatment, and finance part of their life-saving cancer treatment from personal savings or fundraisers

As Canadians, many of our lives have already been touched by cancer in some way. With the likelihood of being diagnosed with cancer approaching 50%, we simply cannot allow this inequity to continue – to treat some, and not treat others.

Even in tight fiscal climates, we cannot use “lack of budget” as the reason to perpetuate an artificially divided system that undermines basic principles of fairness and equality for all patients. We cannot accept anything but a full and patient-centred review of the principles of cancer drug coverage by those provinces whose practices currently discriminate against those needing oral/take-home medications:

  • Ontario
  • Nova Scotia
  • New Brunswick
  • Newfoundland and Labrador
  • Prince Edward Island.

Because when it comes to cancer, whether the treatment formulation is “for here” or “to take out” should not make a difference for any patient or family – anywhere in Canada.

-------------

Case Example of Steven A. Canadian Showing Different Out of Pocket Costs Across Canada

  • 45 years old. Self-employed as a mechanic; has no private drug insurance
  • Marital status: Married with children living at home.
  • Diagnosis: advanced renal cell (kidney) cancer. Requires systemic therapy with an established, provincially listed cancer drug.  For this comparative case study, the drug is available in both intravenous and oral formulations. (In reality, many cancer drugs are available in one formulation – increasingly in oral/take-home formulation only.
  • In Scenario A, Steven and his wife live with their two adult children for a combined household income of $200,000 less 30% taxes ($140,000 net for four adults)
  • In Scenario B, Steven and his wife support two young children on a combined income of $120,000 ($85,000 net combined).

Out of Pocket Costs for the Patient and Family -  Across Canada, Same Drug

Patient Requires Cancer Therapy that is “On Label” (Per Criteria) and Listed on the Provincial/Territorial Formulary

Both medications cost $6,000 per month for 12 months

 

In-hospital infused

“cancerdrug-mab”

Take-home Oral Cancer

“cancerdrug-ib”

 

Regardless of Household Income Levels

A) Total Household Income $200,000 ($140,000 Net)

B) Total Household Income $120,000 ($85,000 Net)

BC

$0

$0

$0

AB

$0

$0

$0

SK

$0

$0

$0

MB

$0

$0

$0

ON

$0

$4,800 Trillium Deductible[9] (4% of Net Household Income)

$3,400 Trillium Deductible (4% of Net Household  Income)

QC

$0

$1,006 Maximum individual deductible[10]

$1,006 Maximum Individual deductible

NS

$0

$38,200 Deductible
$28,650 Copayment
NS Family Pharmacare pays 100% after $47,750[11]

$23,400 Deductible[12]

$17,550 Copayment

NS Family Pharmacare pays 100% after $29,250

NL

$0

$14,000 (10% Net family income). Out-of-pocket limit set at 5%, 7.5%, or 10% of net family income[13]

$8,500 (10% Net family Income). Out-of-pocket limit set at 5%, 7.5%, or 10% of net family income.

NB

$0

$2,000 Annual  Insurance Premium per adult
$0 annual deductible, $30 copayment per prescription.[14] New plan introduced 2014.

$2,000 Annual  Insurance Premium per adult
$0 annual deductible, $30 copayment per prescription.[15] New plan introduced 2014.

PEI

$0

$24,000 Family Deductible under Catastrophic Drug Program = 12% on household income > $100,000[16]          

$14,400 Family Deductible under Catastrophic Drug Program = 12% on household income > $100,000

Territories

$0

Widely variable. Up to 100% coverage through NIHB.

Widely variable. Up to 100% coverage through NIHB.

 

Note that patient assistance programs, when available, do not help with leftover costs for households with higher incomes, typically over $100,000 annually.

 



[1] CanCertainty May 2014 survey of 1857 Canadians using voice and online polling: www.cancertaintyforall.ca

[2] Cameron Institute: The Institutionalized Discrimination of Cancer Patients – Not What Tommy Douglas Intended: A Business Case for the Universal Coverage of Oral Cancer Medicines in Ontario and Atlantic Canada.

[3] BCCA Principles, Presentation by Dr. Susan Walliser, Pharmacy Practice Leader, British Columbia Cancer Agency

[4] Additional “supportive care” medications such as those required for nausea, anemia, and pain control may or may not be covered, depending upon the province.

[5] CanCertainty survey of >1800 individuals, May 2014

[6] Dr. Helen (name withheld), CBC Radio One : Ontario Today in conversation with Dr. Sandeep Sehdev, March 24 2014.

[7] Han D, Trinkaus M et al. Overcoming Obstacles in Accessing Unfunded Oral Chemotherapy : Physician Experience and Challenges JOP July 1, 2013 :188-193 http://jop.ascopubs.org/content/9/4/188.full

[8] Goodin S, Griffith N, Chen B, et al. Safe handling of oral chemotherapeutic agents in clinical practice: recommendations from an international pharmacy panel. Journal of oncology practice / American Society of Clinical Oncology 2011; Jan, 7(1) 7-12 http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3014516/

[9] http://www.health.gov.on.ca/en/public/programs/drugs/programs/odb/opdp_trillium.aspx

[10] http://www.ramq.gouv.qc.ca/en/citizens/prescription-drug-insurance/Pages/amount-to-pay-prescription-drugs.aspx

[11] NS Family Pharmacare Calculator : http://novascotia.ca/dhw/pharmacare/family-calculator.asp

[12] NS Family Pharmacare Deductibe must be paid in FULL before patients start to pay “only” the copay amount of 20% per prescription.

[13] NLPD Assurance Plan via http://www.parl.gc.ca/Content/LOP/ResearchPublications/prb0906-e.htm

[14] New Brunswick Drug Plan Premium: http://www2.gnb.ca/content/gnb/en/departments/health/MedicarePrescriptionDrugPlan/NBDrugPlan/Premiums.html

[15] New Brunswick Drug Plan Premium: http://www2.gnb.ca/content/gnb/en/departments/health/MedicarePrescriptionDrugPlan/NBDrugPlan/Premiums.html

[16] http://healthpei.ca/catastrophic

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Renewed Call to Focus on Cancer Drug Access This Fall

For many of us, September brings a renewed sense of the possible – of what we can achieve by working together. This fall, cancer advocates hope that our work to highlight the obvious gap between intravenous and take-home cancer drug coverage will lead to some positive steps towards universal coverage for ALL cancer medications.

As we have all said so many times, whether a drug is fully funded for a cancer patient should not depend upon whether the drug goes into the vein or into the mouth – or whether it is administered in a hospital or a home setting. It’s time to level that playing field with a program announcement in the provinces that have two completely different systems for intravenous and take-home cancer meds: Ontario, Nova Scotia, Newfoundland and Labrador, New Brunswick, and PEI.

Here’s a snapshot of where we are today:

March 2014: 35 cancer patient organizations, backed by oncologists and other healthcare professionals, came together to launch the CanCertainty Campaign – a campaign specifically targeted at resolving an obvious gap in cancer coverage. We recognized that this is not an issue for any ONE cancer, but an issue for ALL cancers and for every new cancer diagnosis in each of the five provinces that have lagged behind in providing access to new orally administered cancer therapies.

Ontario: The Take-Home Cancer Issue is Being Studied; Will Need Our Support

On May 8th, CancerCare Ontario brought together a wide range of stakeholders to discuss the issues surrounding coverage of oral (and other take-home) cancer medications. The CanCertainty Coalition was represented at that meeting. We were pleased to hear strong consensus from oncologists and many experts working within the cancer system that this inequity must be resolved.

We look forward to a full report from CancerCare Ontario to the Ministry of Health and Long-Term Care (and to our new Health Minister, Dr. Eric Hoskins) later this fall. When the report is released, cancer patients and advocates will need to ensure that their elected members all fully appreciate the urgency of rectifying this inequity.  We cannot afford to have the report filed for future consideration, or pending further studies that would further delay equal access to cancer medications. Stay tuned!

Atlantic: Nova Scotia, Newfoundland and Labrador, New Brunswick, and Prince Edward Island

The CanCertainty Coalition has been reaching out to oncologists, nurses, pharmacists, cancer groups and cancer patients and their families across Atlantic Canada in preparation for an awareness campaign that will launch this fall.

While some have quietly said that specific Atlantic provinces will not consider implementing any sort of equity in cancer drug coverage until Ontario makes the first move, we are confident that the voices of Atlantic Canada CAN and WILL make a difference.

Canadians living in Nova Scotia, Newfoundland and Labrador, New Brunswick and PEI should be outraged with what they are expected to pay out of pocket if cancer strikes – especially given that Canada’s highest incidence and mortality rates are in Atlantic Canada.

A cancer medication that costs a patient $0 in BC, AB, SK, or MB can result in deductibles in the tens of thousands of dollars in Nova Scotia. A family with a pre-cancer diagnosis total household income of $120,000 ($85,000 net) would be expected to pay $23,400 up front as their deductible, and then a partial cost for the next $17,550 PER YEAR. These unexpected costs hit at a time when the patient is in a crisis from the cancer diagnosis and may need time of work due to treatment side effects.

How do the other provinces fare?

  • A family with similar income in PEI would face a deductible of $14,400
  • In Newfoundland and Labrador that “pay up front” deductible would be $8,500.  
  • In New Brunswick, if the cancer drug is listed by the province, the newly implemented drug plan limits the premium to $2,000 per person per year, along with a $30 copayment per prescription.

In Western Canada, provincial Health Ministries have long since recognized that cancer is cancer. Treatment is treatment. IV and take-home cancer drugs are funded equally. For the same drug that costs a NS family $23,400 as a deductible, patients in BC, AB, SK, or MB would pay what they would pay for intravenous - $0.

Join the CanCertainty Campaign

Here’s how you can help:




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Survey Reveals Significant Gaps Between Expectations and Reality for Cancer Patients

The CanCertainty Coalition recently ran a survey of over 1800 Canadians asking each just 10 questions about their expectations about cancer care in their province. In total, 1370 Canadians were reached by phone and 486 responded to an online survey between May 1-15, 2014.

Results show some significant and concerning gaps between what Canadians expect and current realities. While we continue to study the results in detail, we wanted to share some key highlights.

Three Major Gaps to Close:

1. Wait Times from Consultation to Starting Cancer Medications

When asked: “how long do you think would be a reasonable length of time to wait until you start your medication”, the vast majority of respondents (n=1485) wanted and expected to start quickly:

  • 69% said less than one week
  • 23% said 1-2 weeks

In total, 92% of respondents believe a reasonable wait time would be less than two weeks.

Infographic

The reality? Two weeks is in fact the metric that Cancer Care Ontario uses for Intravenous therapy. However, there is no measurement whatsoever of wait times for take-home therapies including oral cancer drugs. The harsh reality is that many patients wait a stressful 6-8 weeks or longer. Take-home therapies in ON and Atlantic Canada require paperwork, many contacts, faxes and phone calls, and delays. Wait times are clearly unacceptable and must be addressed.

In other provinces, the patient moves from the oncologist’s office directly to the hospital pharmacy to pick up their medication. In Manitoba, if a patient is not already enrolled, the “wait time” may extend from 24 hours to 48 hours. In Ontario, 48 hours can become 48 days or more...

2.  Cancer Patients and Non-Patients Alike Believe that IV and Take-Home Medications Should be Funded Equally.

Our survey intentionally reached out to 957 people (52%) who did not consider themselves cancer patients, survivors, caregivers, or healthcare professionals to gauge a wider spectrum of public opinion.  A full 87% of total respondents (n=1444) believe that IV (intravenous) and Take-Home (oral and injectables) should be funded equally.

infographic

As is clearly stated in the Principles of the British Columbia Cancer Agency (BCCA): “The route of administration of the cancer treatment should not be a consideration for a different funding mechanism”.

British Columbia, Alberta, Saskatchewan and Manitoba all fund cancer treatments on their formulary without regard to the formulation of the drug as an IV or oral or injectable.  

Why have Ontario and the Atlantic Canadian provinces not kept up with the rest of Canada? More and more cancer treatments will be take-home medications – taking therapy at home will save patients visits to the hospital for IV chemo, save caregivers time off work, and save our healthcare systems money by reducing demand on hospital infusions. It just makes sense.

3.  Where You Pick Up Your Cancer Drugs Might Surprise You...

Depending upon where you live in Canada, you might pick up your cancer drug at a cancer centre, a regional hospital, or at a retail pharmacy. We asked the question: “Given the choice of a take-home medication, where would you prefer to have your first prescription of cancer drugs dispensed to you?”

  • 58% (893) preferred “at a cancer centre where I receive care”
  • 17% (265) preferred “from a pharmacist at a retail pharmacy”
  • 15% (226) preferred their cancer drugs shipped directly to their home.

Subsequent renewals showed a more even split of preference (29%/35%/25% respectively). Yet, when asked if they had an important question about a take-home cancer drug, only 7% believed they would get the most accurate information about the drug’s safety at a retail pharmacy1.

In 2012, Ontario spent $26 million dispensing take-home therapies (and supportive care drugs) through retail pharmacies by funding markups (8%) and dispensing fees to retail pharmacies .  While convenience is undoubtedly important, especially in rural areas, other provinces have built systems whereby the first dose is dispensed at the cancer centre and follow-up renewals are shipped directly to home. Patients in other provinces tell us that those systems work.

Can we do that here? Our White Paper estimates state that an additional $58-$93 million would be needed to fund ALL of the take-home cancer medications for everyone in Ontario (and proportionally the same for Atlantic provinces). Are patients in those provinces willing to sacrifice convenience and pick them up directly at the cancer centre or regional hospital if those savings could be put back into the cancer system?

Thoughts and comments appreciated!

Thank you to all for providing such great input. 



1 CancerCare Ontario: Briefing Note: Reimbursement and Distribution for May 8 2014 Think Tank: Enhancing the Delivery of Take-Home Cancer Therapies in ON.

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CanCertainty Campaign is Building Momentum for Fairness in Treatment Coverage

Thank you for your support!

The CanCertainty Campaign has grown to include 34 cancer patient organizations, a group of committed oncologists, four supporting patient groups, and countless Canadians from coast to coast to coast. Thank you to ALL who have helped to share the message that cancer treatment – whether it goes in the vein or in the mouth – should be funded equally.  

This campaign is truly unprecedented in Canada because it is not about any one type of cancer or any specific treatment. Cancer patient organizations from St. John’s to Vancouver have come together as a single voice because this issue affects patients with every type of cancer – breast, brain, colorectal, lymphoma, leukemia, myeloma, sarcoma, colorectal, kidney, gastrointestinal... indeed anyone touched by cancer is affected by this issue. In Ontario and the Atlantic provinces, cancer patients are left scrambling to fill out paperwork, wait for approvals, and then find the funds to cover the remaining cost of any cancer therapy that can be taken at home.  We simply cannot let this inequity continue.

Why We Came Together as the CanCertainty Coalition

Cancer patient organizations have each been addressing issues for patients who require oral cancer drugs. We’ve been tackling the issue one patient at a time, one province at a time, one treatment at a time. In November 2013, we put our heads together to explore the idea of working together.

We began by studying what had happened in Manitoba in 2011/2012 leading to the announcement of the Manitoba Home Cancer Drugs Program (that campaign was led by the Canadian Cancer Society in Manitoba). What would it take to make those changes in Ontario and Atlantic Canada?

Steps We’ve Taken To Date:

  1. We began by releasing a detailed White Paper, authored by a respected  health policy institute, The Cameron Institute, that laid out the rationale and budget impact for making this needed change.  The paper is called: The Institutionalized Discrimination of Cancer Patients - Not What Tommy Douglas Intended: A Business Case for the Universal Coverage of Oral Cancer Medicines in Ontario and Atlantic Canada.
  2. We began meeting with key influencers and decision makers with pre-release versions of the White Paper.
  3. On March 10th, we released a Public Awareness campaign that has reached Canadians through radio, television, and print media.
  4. We drew out the complicated maze of oral drug coverage in an easy-to-understand infographic.
  5. Thanks to your support, we then developed a compelling video to explain the situation faced by so many cancer patients and to urge people to share the word and support the campaign.

Campaign Progress to Date, beginning in Ontario

We’ve met with Government and with opposition parties in Ontario. We’ve been there with representatives from breast cancer, brain tumours, kidney cancer, neuro-endocrine tumours, GIST, the Cameron Institute, and oncologists from PACCT.  We’ve met with senior officials from:

  • Ministry of Health
  • Premier’s Office
  • Ministry of Finance.

We’ve met personally with:

  • Hon. Deb Mathews, Minister of Health and Long-term Care
  • New Democratic Party Health Critic, France Gelinas
  • Progressive Conservative Party Health Critic, Christine Elliott.

The Ministry has responded by re-aligning a planned May 8th meeting to discuss the issue of oral and other take-home cancer medications. This meeting is titled “Think Tank:  Enhancing the Delivery of Take-Home Cancer Therapies in Ontario.”  We’re suggesting very strongly that, as cancer patient representatives, we need to be there!

Next Steps

We need for all Canadians, and specifically those living in Ontario and the Atlantic Provinces, to continue to remind our elected representatives that solving this funding gap must remain a priority. We are not talking about adding new drugs to the provincial list, but simply to be FAIR and EQUITABLE with those drugs already listed. Treat IV and Oral cancer drugs as equivalents as is the case in BC, AB, SK, MB, and QC.

We know that providing coverage to oral cancer drugs (just as if they were IVs) will not bankrupt a province. However, NOT funding them will most certainly bankrupt individual Canadians – whether they are young, working, self-employed, without benefits, partial benefits or, in some provinces, just happen to be under 65.

Here’s How You Can Help

Your ideas, suggestions, and thoughts are most welcome! We look forward to sharing progress with you again – one province at a time!

Because, wherever you live in Canada, cancer is cancer, and treatment is treatment.  IV and oral treatments should be funded fairly and equally for all Canadians.

info@cancertaintyforall.ca



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Challenges faced by Atlantic Canadian Cancer Patients

Each of the provincial governments in Atlantic Canada has drawn a clear line on funding of approved cancer treatments: 

  • If it is an IV drug that needs to be administered in a hospital outpatient setting it will be funded by provincial goverment 100%.
  • However, if it is something taken outside of hospital (oral or injectable), it is the patient's responsibility to pay for it.

This is unlike the western provinces where approved cancer drugs are funded 100% regardless of how one takes the drug

 

As pointed out by the CanCertaintyCoalition of patient groups, the future will see oral cancer treatments dominating the market. Since 2012, approximately 60% of the cancer treatments that have been reviewed for potential coverage by the pan-Canadian Oncology Drug Review have been oral drugs. The average price tag for these drugs is $7,500 per month.  

 

Issue Number 1: Patients in Atlantic Have Less Private Insurance Coverage

Atlantic Canada has a lower rate of those with private drug insurance than the rest of Canada (29.8% according to Canadian Life and Health Insurance Association, Facts and Figures 2012) Many of these plans are small, leaving significant leftovers in co-payments and/or covering a limited amount of prescription drugs per year. Some patients have a cap of $2,000 for the entire year. This is related to the nature of many of the industries in Atlantic Canada that are seasonal and small. Many in Atlantic Canada are self-employed with little to no coverage at all

 

Atlantic Canadians with significant insurance cost leftovers and those without coverage rely on provincial prescription drug programs to fund their oral cancer treatments (in NS, this is called "Pharmacare"). Every Atlantic province has a seniors drug program that typically covers these drugs with some but reasonable leftovers.

 

Issue Number 2: Patients Face Significant Deductibles that Many Simply Cannot Afford

Only Nova Scotia and Newfoundland/Labrador have a "universal" public drug coverage program that covers those under age 65, but each program leaves significant leftovers and requires information on the household’s gross taxable family income to determine how much help they can receive  (Note that patients are never asked about their income when they need an IV drug because the hospital simply provides it with the provincial funding.)

 

How Much Do Individuals Pay?

Nova Scotia typically requires patients on their univeral public program ("Family Pharmacare") to pay for their prescription drugs up front until a certain amount is reached (called a "deductible"). Once that amount is reached then they will receive 80% coverage. That amount varies greatly by income and has been criticized publicly for unrealistic expectations of affodability since its inception in 2008.

Examples 

  1. For example, a person with a gross annual family income of $35,000  would have to pay $1400 + a 20% copayment before receiving any help from Family pharmacare. This means if that person required a drug that cost $6,000 per month, that person would have to come up with $2600 to be able to start the drug.

  2. A person with a gross annual family income of $70,000 would have to pay $7,700 + a 20% copayment, so that person would have to pay $9,700 for that drug before any help would be received. Comparatively, a person over 65 on NS Seniors Pharmacare would only pay $382 in a copayment for the year.

 

What about NL, NB, PEI?

 

In Newfoundland and Labrador, the program is similar, but puts a cap on deductibles that range from 5-10% of gross income.

New Brunswick currently requires those under 65 to apply for prescription drug benefits through the welfare system (Note:  that will change May 1 and access will be reasonable, with coverage kicking in right away.) However, NB typically lists fewer oral oncology drugs than either Nova Scotia or Newfoundland and Labrador. If the drug a patient needs is not on the provincial formulary, the new program of coverage will not apply.

PEI's catastrophic drug plan is similar to Nova Scotia and New Brunswick, but puts a cap on deductibles that range from 0-12% of gross income.

 

Issue Number 3: Mountains of Paperwork and Tax Forms Required!

With patients under 65 facing signficant leftover costs on their oral cancer treatments, each Atlantic province relies heavily on the financial assistance provided through pharmaceutical-sponsored "patient assistance programs" or "PAP's" (i.e. the makers of the drug set up a program help to the patient with the cost, often requiring another financial assessment - including a copy of their tax assessment).

All of this paperwork and bureaucracy takes TIME. There is a significant time delay to treatment for those without adequate private health insurance.  It can take anywhere from 1-6 weeks to arrange funding,  while those needing an IV drug simply get booked in to the chemo unit the following week...

The Bottom Line:

It's time for the provincial governments in ON, and each of the Atlantic Provinces to come to the assistance of cancer patients. Fund the oral cancer treatments using the same system as used for intravenous. Cancer is Cancer. Treatment is Treatment. Fund them equally.

Support this campaign. Share with your friends and colleagues. Make a Donation if you can. It's time Canadians spoke up and we addressed this issue for cancer patients today and in the future.

 

 

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One in three cancer patients in ON face this challenge...

Earlier this week I sat down with an oncologist from Brampton, Ontario to ask about this oral versus intravenous issue and how it affects the patients he sees. He said quite plainly that ONE in every THREE patients he sees has trouble accessing cancer medications due to the cumbersome process for approvals.

It goes like this:

Oncologist makes the diagnoses and chooses the right drug, which just happens to be an oral drug.

Does patient have insurance? No. Then they have to fill out the forms for Trillium...sometimes there is a Medicines Reimbursement Specialist to help because this is an extensive process requiring income tax information from everyone in the household. Sometimes the patient has to do the paperwork themselves because one third of cancer centres don't have someone to help. Sometimes the patient is just overwhelmed and doesn't understand why they have to do this. Or has language issues. Or hasn't filed their taxes because they have been ill.

And then they wait... could be 4 weeks, could be 6 weeks for Trillium to get back to them.

The oncologist must also do the paperwork for the EAP program in Ontario (Exceptional Access Program). That application, along with the patient's medical information, will be reviewed by the EAP office (actually by an oncologist under contract with EAP) to determine eligibility. Sometimes the application is denied. And then the initial oncologist fills out more paperwork to appeal. (Of note: this is not the case for intravenous drugs from CCO. The oncologist makes the order online according to eligibility criteria.)

Six to eight weeks later, the patient has a second appointment. Their condition appears to have deteriorated. They still have no drug.

In Ontario, if this was an intravenous drug, Cancer Care Ontario has a mandate that all patients should wait no longer than 2 weeks from consult to first treatment. For oral cancer therapy, there is no mandated timeframe.

Patients wait for private insurance. They wait for Trillium. They wait for EAP.  and they find out how much they will have to pay themselves. And how they will afford it.

Unfortunately cancer cells don't wait until the funding gets sorted out.

Tumours grow. Patients get sicker. And then they (we) lose our best chance to keep this disease in check.

Is that fair? We have a cancer system in Ontario. Let's make it a cancer system for all Ontarians for all cancers and all drugs that are provincially approved.

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