Enbrel in Canada

[Guest guest]

Enbrel wasn't available to Canada until March 2001. It became available here in

December 1998.

According to the Canadian Rheumatology Association, approximately 300,000

Canadians (1 in 100 people) are thought to have Rheumatoid Arthritis. According

to our Arthritis Foundation, Rheumatoid arthritis affects 2.1 million Americans.

There is a much larger demand in this country for the medications to treat RA.

There is a well documented shortage of rheumatologists in Canada. Maybe

between the fact that it was approved much later than in the US, and there

aren't as many patients on it in Canada, plus the fact of less rheumatologists

available to prescribe it.

I don't have access to information about what countries get medications. These

are just my own thoughts about why the shortage may not affect Canada. I

personally have not been affected by

the shortage, but I get my medicines in 3 month quantities through the mail.

I'm hoping my next refill isn't a problem. If you have knowledge about why this

shortage is in US, I'd love to hear it.

a

[Guest guest]

Hi Mike,

You wrote below that your Enbrel is covered in Canada. I'm from

Vancouver Canada and my Rheumatologist told me it's not covered by

Medical Service Plan (gov't medicare). It is covered for RA, but not

for PA. Under what insurance plan are you covered? I have Blue

Cross through my employer, so maybe they would cover it.

Thanks,

Sharon

> > > hi all.

> > > I am nearing my first year of enbrel shots and it

> > > has been a

> > > godsend for me. I have went from a cane to get

> > > around to back to work

> > > full time in a mail room of an insurance company.I

> > > take enbrel twice

> > > a week and 50 mg of vioxx a day. Also am cutting

> > > down my prednisone to

> > > 5mg every two days and eventually none at all. I

> > > have p.a in almost my

> > > whole body. I am a canadian so I experienced no

> > > shortages of enbrel as

> > > we are on a different distrubtion system here.

> > Also

> > > have found that my

> > > enbrel reduces my psoriatic patches greatly. My

> > > doctor tells me that

> > > enbrel works better in patients like myself who

> > had

> > > a lot of

> > > inflamation.

> > > Mike

> > >

> > >

> > >

> >

> >

> > __________________________________________________

> >

[Guest guest]

Hello..I am not sure how my doctor got me a D.I.N. But

from what i have read,Enbrel is sure working for P. A

more than R.A.

[Moderator's note: What's a D.I.N.? Ron]

--- sjssjs0000 <sjssjs00@...> wrote:

> Hi Mike,

>

> You wrote below that your Enbrel is covered in

> Canada. I'm from

> Vancouver Canada and my Rheumatologist told me it's

> not covered by

> Medical Service Plan (gov't medicare). It is

> covered for RA, but not

> for PA. Under what insurance plan are you covered?

> I have Blue

> Cross through my employer, so maybe they would cover

> it.

>

> Thanks,

> Sharon

>

[Guest guest]

DIN is " Drug Identification Number " . In Canada, at least, it is printed

on anything containing a pharmaceutical - even toothpaste if it contains

fluoride. This is what the insurance companies look for in determining

whether or not a drug will be covered - no DIN, no coverage. Some drugs

are covered 100%, some only a part, some not at all. My understanding

is that Enbrel is covered by most private insurers, but that the

provincial health plans are still holding out. For non-Canadians, our

provincial health plans set an annual figure from which they will start

to cover drug costs. Here in British Columbia, that figure is $1,000.

Last year it was $800. I paid to that amount which got me up to

November, then the pharmacy just started charging me somewhere around

20% of what I would have paid, and the government paid the rest.

Fortunately I have a private insurer through my husband's work and we

end up not paying much at all. I have not had to put Enbrel through

them though (and hopefully I will never have to take the stuff) so I

don't know just how much they cover - and it varies from province to

province. I did ask my insurer about that and was told to get the DIN

and they will tell me what they cover and what they don't. My

understanding is also that the number can change according to what form

and dose the drug comes in.

Re: [ ] Re: Enbrel in Canada

Hello..I am not sure how my doctor got me a D.I.N. But

from what i have read,Enbrel is sure working for P. A

more than R.A.

[Moderator's note: What's a D.I.N.? Ron]

--- sjssjs0000 <sjssjs00@...> wrote:

> Hi Mike,

>

> You wrote below that your Enbrel is covered in

> Canada. I'm from

> Vancouver Canada and my Rheumatologist told me it's

> not covered by

> Medical Service Plan (gov't medicare). It is

> covered for RA, but not

> for PA. Under what insurance plan are you covered?

> I have Blue

> Cross through my employer, so maybe they would cover

> it.

>

> Thanks,

> Sharon

>

[Guest guest]

Hi Mike.

I hadn't heard that Enbrel was more effective for PA compared to RA.

You would think, then, that it would be covered for PA too. Do you

(or anyone else) have any links to articles that say Enbrel is more

effective for PA than for RA?

Thanks,

Sharon

> > Hi Mike,

> >

> > You wrote below that your Enbrel is covered in

> > Canada. I'm from

> > Vancouver Canada and my Rheumatologist told me it's

> > not covered by

> > Medical Service Plan (gov't medicare). It is

> > covered for RA, but not

> > for PA. Under what insurance plan are you covered?

> > I have Blue

> > Cross through my employer, so maybe they would cover

> > it.

> >

> > Thanks,

> > Sharon

> >

[Guest guest]

Thanks -- that's very helpful!

Sharon

> DIN is " Drug Identification Number " . In Canada, at least, it

> is printed on anything containing a pharmaceutical - even

> toothpaste if it contains

> fluoride.

[Guest guest]

I hadn't heard that Enbrel was more effective for PA compared to RA.

You would think, then, that it would be covered for PA too. Do you

(or anyone else) have any links to articles that say Enbrel is more

effective for PA than for RA?

Thanks,

Sharon

---Sharon,

There is a lot of information about Enbrel and studies done for PA at this web

site-- www.healthtalk.com

That is where I first heard of Enbrel. You can listen to the talks or pull up

a transcript and read it.

Dana

[Guest guest]

Hi Mike,

Thanks--my e-mail address is sjssjs00@...

Sharon

> > Hi Mike.

> >

> > I hadn't heard that Enbrel was more effective for PA

> > compared to RA.

> > You would think, then, that it would be covered for

> > PA too. Do you

> > (or anyone else) have any links to articles that say

> > Enbrel is more

> > effective for PA than for RA?

> >

> > Thanks,

> > Sharon

> >

[Guest guest]

Hi Mike,

Glad to hear it's working so well for you. It's good to know there

are meds out there that actually make a big difference.

Sharon

> > Hi Mike.

> >

> > I hadn't heard that Enbrel was more effective for PA

> > compared to RA.

> > You would think, then, that it would be covered for

> > PA too. Do you

> > (or anyone else) have any links to articles that say

> > Enbrel is more

> > effective for PA than for RA?

> >

> > Thanks,

> > Sharon

> >

[Guest guest]

In my previous e-mail, I included a link to an interesting article on

delays in the approval process in Canada for the newer arthritis

drugs. (It's about a woman's lengthy struggle to have Enbrel

treatments reimbursed for her very severe & destructive RA -- she

went through 12 months of pain, operations & hospitalizations for no

good reason).

The link doesn't seem to work anymore, so here's the text of the

article:

'My one hope was this drug'

Claude National Post

Thursday, November 28, 2002

SPRINGFIELD, N.B. - When the joints in Wilhelm's body began to

disintegrate one by one a few years ago, and no medication was

working, she and her doctor turned to a government department in

Ottawa for help.

There was nowhere else to go and the pain was getting unbearable.

Only one drug could make Ms. Wilhelm better, but it was in the hands

of Health Canada and it was tied up in red tape. The bureaucrats told

her the drug would be released soon and to wait. So she waited -- for

nearly 12 months. It seemed like forever.

" Your life is nothing, " the 42-year-old said recently of her decade

living with rheumatoid arthritis (RA). " It's an empty shell of a

life, and all you are is a body that's existing in pain ... At least

with a terminal disease, you either get better, or die. "

There was no getting better, or quick death. Only two joints in her

body -- her left hip and right ankle -- were unaffected by the

disease. Her doctor said Ms. Wilhelm's " whole skeleton was on fire. "

The fire can last a long time: RA shortens the lifespan by as much as

18 years, but Ms. Wilhelm, a Springfield mother, was still young. She

had decades of pain to endure.

Most pain is ultimately manageable. You beat it back with pain-

killers and anti-inflammatories, and you grit your teeth when some

seeps through, and you learn to live with it. That's what Ms. Wilhelm

did. She became an expert in pain denial. The Wilhelm family -- mom,

dad, two grown kids and two old dogs -- also learned to cope.

" There were quite a few years where I didn't do any cooking at all, "

Ms. Wilhelm said, at the kitchen table of their small rural home. " We

ate mostly takeout and M & M's [meats] and pre-packaged food. The

exhaustion that comes with this disease is overwhelming.

" I couldn't get out of bed in the morning. Kerry [her husband] was

waiting on me, the kids were doing laundry, I couldn't even tie up my

own shoes. I just lay in bed and watched TV. I formed a really good

friendship with [television talk show host] Rosie O'Donnell. "

Humour helped. So did keeping a daily journal and having a supportive

husband. But in the end, Ms. Wilhelm came to realize that it was not

the disease that was defeating her. It was an unresponsive federal

government, telling her to wait.

" My one hope was this drug, " she said in a soft voice, tears welling

in her eyes. The drug was called Enbrel. If Ms. Wilhelm had been

living in the United States, or Europe, or Chile or Israel, she could

have injected herself with a $165 dose that would have made her

better almost immediately. But this was Canada, and Enbrel was not

yet a legal drug. The drug was in a holding pattern outside the

laboratories of Health Canada. Before pharmaceuticals can cross the

border, they need a stamp of approval, like a visa, which may make

perfect sense to a bureaucrat, but is illogical to someone in deep

pain.

Some people cheat. Ms. Wilhelm and her husband considered a trip to

the United States to find a doctor who would prescribe Enbrel for

her. But they didn't. They worried they might get the doctor in

trouble. And besides, Health Canada was saying, " Anytime now ... "

The numbers are hard to come by, but it is estimated there are

thousands, maybe tens of thousands, of Canadians who are held captive

by the red tape of federal drug approval. Periods of hospitalization

and time lost at work could be costing the economy billions of

dollars, said a group called the Best Medicines Coalition.

Other Western countries do it better and faster than Canada. The

United States, the United Kingdom, Australia and Sweden all manage to

process most new medicines more quickly. Enbrel was approved in

Canada 763 days -- more than two years -- after it got the go-ahead

in the United States. Another RA drug, Remicade, took three times

longer to approve in Canada than it did in the United States.

Slow drug approval is especially hard on the estimated 50,000

Canadians with HIV. Often, they build up a resistance to available

drugs and then have to wait for months or years for new medications

to clear.

" It's very anxiety-producing, " said Bob Mills of Edmonton, who was

tested positive for HIV in 1989. " We're beginning to understand how

people feel in developing countries, when things that can help them

are there, just out of reach. "

Mr. Mills said one important HIV drug, a protease-inhibitor called

Nevirapine, was approved within 181 days in the United States.

Approval took more than four times as long -- 809 days -- in Canada.

It is urgent that the drug-approval process keep pace with the

disease, Mr. Mill said. " Since [drug] combination therapy began in

1996, it's lowered the rate of death by 75%. But the death rate is

once again going up. "

Health Canada said the approval process in Canada is more rigorous

than in other countries, and there are fewer recalls. But, despite an

infusion of $40-million in the last budget to speed up the process,

many drugs languish in the in-box at Health Canada for as long as 18

months before the scientists look at them.

This bureaucratic delay comes after the manufacturers have submitted

the drugs to years of clinical trials to make sure they are safe.

(Ninety per cent of all new drugs are eliminated during these early

stages because of harmful side effects.)

" The federal government must stop trying to save money on the backs

of seriously ill Canadians, " Pat , chairwoman of the Cancer

Advocacy Coalition, said this year. " Sick people are getting sicker

and the only barrier to better health is the backlog on the Health

Canada loading dock. "

One patients' group said there are as many as 140 pharmaceuticals in

the pipeline.

Health Canada will not talk about any specific drugs such as Enbrel.

But one official, Hill, said a major hurdle is the shortage of

scientists to sit on the approval committees. " There just aren't

always the bodies that you can hire or contract to put on these

[committees]. So there are limits to the number of submissions that

we can deal with at any one time. "

The backlog at Health Canada has enormous social and financial

implications.

Ms. Wilhelm has done the calculations. She figures her operations and

other hospital costs over the years total more than $500,000, all of

it borne by the taxpayer. The drug that eventually got her back on

her feet costs $330 a week.

Help came, but it was a long time coming. Beginning in November,

1998, when Enbrel was approved in the United States, Ms. Wilhelm had

her right hip replaced. Then her left ankle was fused with pins and

screws. Next, both knees were replaced. Meanwhile, she was swallowing

15 Tylenol tablets three times a day. When they stopped working, she

switched to similar doses of Percocet, and then another drug called

OxyContin, along with iron injections to keep her blood count up.

In 1999, her husband carried her to a hospital bed, where she stayed

for two months, under round-the-clock care, at a cost of between $800

and $1,000 a day.

Alarmed by Ms. Wilhelm's deterioration, her doctor, ,

a Fredericton rheumatologist, launched a fierce lobbying campaign on

her behalf, trying to convince politicians to free up the drug.

" Begging, pleading, phoning the provincial government, the federal

government, involving MLAs, trying to crank up as much pressure as we

could, " Dr. said. " And it took a year. "

They were 12 months that Ms. Wilhelm will never forget.

" It was a horrible time. I was 38 years old and I couldn't do

anything for myself ... I decided I wasn't going home. They could

keep me in the hospital, or they were going to keep me in a nursing

home. I wasn't going to do this to my family any more. "

Politicians, she discovered, understood little about her disease.

They knew all about high-profile illnesses such as cancer and AIDS,

but they thought arthritis was something benign, a disease of old age.

" They don't think of it as an autoimmune disease that takes over the

whole body and destroys it. But I wasn't going to go away. If you're

like me, you have to squeak and make noise. "

Eventually, she and her doctor made enough noise and wore the system

down. In late 1999, Ottawa released a six-week supply of Enbrel under

its " special access " program. After three injections -- 10 days --

Ms. Wilhelm was able to walk again. " Her smile was back, " her husband

said. She could even walk to the mall to shop for Christmas.

" If you're a government official and you have insurance, " said Mr.

Wilhelm, with some bitterness, " you can get Enbrel for yourself or a

family member without any trouble. "

Enbrel was finally approved for general use in Canada in December,

2000, and most provinces have since placed it on their provincial

drug plans, so that people without private insurance can afford it.

The exceptions are P.E.I. and New Brunswick. Mr. Wilhelm's company

plan pays the $330 a week for his wife's injections.

As a result, Ms. Wilhelm, back on her way to health, is struggling

with a deep sense of guilt for being one of the " lucky ones. " She

estimates there are as many as 50 New Brunswickers suffering from

aggressive RA, as she did, who still cannot afford the Enbrel

treatments.

Her advice to them, and to thousands of other Canadians waiting at

the end of Health Canada's bureaucratic pipeline, is simple and

trenchant: " People have to fight, even when you think the politicians

aren't listening. "