Abbvie Canada has reversed the decision to discontinue VIBERZI

[Debbie McAllister]

You took the words right out of my fingers, Annie. All the information from Jeffrey has been a godsend!

[Jeannette]

Please add my thanks for all your effort on our behalf.

[JeRu]

I was able to get my viberzi filled! and I was able to get three months' worth.🙌  Calling around paid off that I know of two pharmacies close to me that have stock. 

Edited May 10 by JeRu

[danb]

The Shoppers Drug Mart I usually get my Viberzi prescription filled at was unable to do so recently so I transferred my prescription to the outpatient pharmacy at one of the hospitals close to me. A day after I transferred my prescription to the hospital pharmacy I picked up my refill. I am impressed at both how easy it was to transfer my prescription and how fast they prepared my refill.

[Jeffrey Roberts]

18 hours ago, danb said:

The Shoppers Drug Mart I usually get my Viberzi prescription filled at was unable to do so recently so I transferred my prescription to the outpatient pharmacy at one of the hospitals close to me. A day after I transferred my prescription to the hospital pharmacy I picked up my refill. I am impressed at both how easy it was to transfer my prescription and how fast they prepared my refill.

I'm a little surprised that Shoppers wouldn't order it for you. It's not like the hospital pharmacy has access to a different wholesaler. I presume Shoppers was unwilling to order it because they don't receive a lot of requests for it. Still, that strikes me poorly on that particular Shoppers.

[JeRu]

It may be the same issue I had with Shoppers Drug Mart. If the Viberzi came through the USA and had its US Viberzi ID number, they wouldn't put it under the Canadian Viberzi Drug Identification Number. Therefore my benefits would not cover the random US number.

It seems to be a Shopper's rule.

I finally had Loblaws fill the prescription from a shipment from Markham.

[danb]

5 hours ago, Jeffrey Roberts said:

I'm a little surprised that Shoppers wouldn't order it for you. It's not like the hospital pharmacy has access to a different wholesaler. I presume Shoppers was unwilling to order it because they don't receive a lot of requests for it. Still, that strikes me poorly on that particular Shoppers.

I got the impression that what they saw in their medication ordering system led them to believe that Viberzi was no longer available to them. But, thanks to the people in this forum, I knew that is not true.

[TAH]

I've had some good news lately with getting my prescriptions filled! The last prescription I got was for 2 months and they have switched back to the generic version, so that seems like it's a good indicator that the medication will be readily available again. Huge relief for those of us who rely on this to attempt to have somewhat normal lives!! I also wanted to comment that I take 100 mg in the morning and 100 mg at night, and I have added in 2 mg of Loperamide in the morning which has made me feel *almost* like a normal person! No longer having extreme racing anxiety and panic attacks about bathrooms or leaving my house, or working in an office again. It's quite freeing when your whole life doesn't literally revolve around a toilet! I hope everyone is also having success

[danb]

Does anyone know what will happen when Viberzi's designation as a "drug for exceptional import and sale" expires? I see in Health Canada's list of drugs for exceptional import and sale that Viberzi's designation expires on January 1, 2024. Will Viberzi continue to be available in Canada after that time?

[Annie Brohman]

Hopefully this is not true but Jeffrey might be able to answer that question.

[Jeffrey Roberts]

Ugh! Let me see what I can find out.

[Annie Brohman]

Thanks Jeffrey 

[Jeffrey Roberts]

I spoke with someone in the Medical Questions call centre at Abbvie Canada. They are not aware of any plans to stop marketing Viberzi in Canada. They felt that we should contact them closer to the date, which I said was unfair to patients to have to wait until that time. I would score them on a 5/10 in helpfulness.

I will be attending the American College of Gastroenterology (ACG) medical meeting in Vancouver in late October. I will speak to the Abbvie Medical Affairs team there to try and get some better clarity.

[Annie Brohman]

Thanks Jeffrey for trying and hopefully 🙏 you will get some good news in October for us. I do appreciate all that you do for us. 

[Jeffrey Roberts]

24 minutes ago, Annie Brohman said:

Thanks Jeffrey for trying and hopefully 🙏 you will get some good news in October for us. I do appreciate all that you do for us. 

It would be nice if we could get the Canadian press to pick up our story. I tried last fall with no luck.

[Jeannette]

Thanks Jeffrey.

Let us know if there is anything we can do to raise the profile of our issues! 

[Jeffrey Roberts]

I sent this to the Globe & Mail and National Post in March 2023 and never heard back. It might be useful if we all try and make this a national story so that Abbvie secures permanent access for us.

[email protected]

[email protected]

Quote

Hello,

This might be a newsworthy story.

Abbvie Canada decided in the spring of 2022 that they would discontinue marketing Viberzi (eluxadoline 75mg & 100mg tablets) a medication for patients with Irritable Bowel Syndrome, due to a business decision. 10% of the population suffer from IBS in Canada ~4,000,000 people. 50% of those have diarrhea predominant IBS, which Viberzi is used.

Patients contacted Abbvie Canada and Health Canada to demand access after the supply dwindled in the fall of 2022.

We were informed in early January 2023 that Abbvie Canada was going to reverse their decision after Health Canada apparently allowed them to use US-based medication under a Health Canada exceptional importation and sale provision. Now we understand that this Health Canada provision will be ending on January 1, 2024. Patients are again very worried about continued access to Viberzi.

I was involved in several threads on the IBS Patient Support Group community forums to share the situation.

I would be pleased to be contacted if you feel that this is a story worth reporting.

https://www.ibspatient.org/community/topic/65887-abbvie-drops-ibs-drug-viberzi-in-canada-devastating-patients-endpoints-news/

 

https://www.ibspatient.org/community/topic/77721-viberzi-is-now-not-available-in-canada-what-do-you-use-now

 

https://www.ibspatient.org/community/topic/75920-abbvie-canada-has-reversed-the-decision-to-discontinue-viberzi/

 

[Jeannette]

Hi Jeffrey

If you can manage to interest local media, I'd be happy to be an 'average IBS sufferer' interviewee. It would also give me a chance to sound off on another issue: the lack of accessible washrooms for people with bowel and bladder conditions.

Jeannette

[Jeffrey Roberts]

Thank you Jeannette. I have found that it really makes the biggest impact if we all email the media ourselves. You can use the 2 emails that I listed in the previous posting. I agree accessible washrooms are as huge issue across the country. In the US they have something called Ally's Law that is being passed in each state. We need an Ally's Law here. Crohn's and Colitis Canada has been trying to move the needle on access, https://crohnsandcolitis.ca/Get-Involved/Advocating-for-change/Access-to-washrooms. They created a GoHere Washroom Access Initiative which is listed on their website.

If anyone discovers other health journalists across the country please share them.

[danb]

While researching Health Canada's list of drugs for exceptional importation and sale I found that Health Canada is surveying Canadians about medication shortages.

This seems like a good opportunity for us to tell Health Canada about the difficulty we are having determining whether Viberzi will continue to be available in Canada after January 1, 2024 when Viberzi's designation as a "drug for exceptional import and sale" expires.

Participating in the survey involves reading their discussion guide and then emailing [email protected] with your answers to four topics listed in the discussion guide.

You can find more information about the survey on this page of their website: https://www.canada.ca/en/health-canada/programs/consultation-improving-access-drugs-health-products.html This consultation ends August 31, 2023.

 

[Jeffrey Roberts]

Love this danb!

[danb]

Today I responded to Health Canada's Consultation on improving access to drugs and other health products in Canada. I'm sharing my response in case anyone else wants to use part of it in their own response to Health Canada's consultation.

You should email your response to [email protected].

Quote

Hi there,

 

This is my response to Health Canada's "Consultation on improving access to drugs and other health products in Canada."

I am a Canadian citizen and I have a prescription for Viberzi, a prescription medication for which there is a tier 3 shortage in Canada. I answered the survey questions in "Key area 1: Improved communication and transparency" of the consultation because those questions are the ones which seem most pertinent to a patient like me. Please see my answers below.

 

Thank you for conducting this consultation.

 

I am happy to hear from anyone at Health Canada who can help me get more information about whether Viberzi will continue to be available in Canada after January 1, 2024. That is the date listed on Health Canada's List of drugs for exceptional importation and sale after which Viberzi may no longer be imported: https://www.canada.ca/en/health-canada/services/drugs-health-products/drug-products/drug-shortages/list.html.

 

Regards,

In the past year, have you looked for information on drug or other health product shortages?

Yes, I have looked for information on drug shortages.

How do you obtain information you need related to a shortage?

First, I Googled "Viberzi shortage." I found https://www.drugshortagescanada.ca/discontinuance/157159. Then, I found ibspatient.org, an online patient forum where patients were discussing the shortage of Viberzi in Canada.

What are your biggest challenges in getting key information to help you deal with shortages?

My biggest challenge right now is determining whether Viberzi will continue be available in Canada after January 1, 2024. That is the date listed on Health Canada's List of drugs for exceptional importation and sale after which Viberzi may no longer be imported.

I asked Viberzi's manufacturer, AbbVie, and they did not give me a definitive answer. I also emailed Health Canada's Drug Shortages Task Force ([email protected]) but have not yet received a reply.

As a member of the public, what information would you consider the most helpful when facing a drug or other health product shortage?

The most helpful information I could receive right now is whether Viberzi will continue to be available in Canada after January 1, 2024. That is the date listed on Health Canada's List of drugs for exceptional importation and sale after which Viberzi may no longer be imported.

What are the biggest challenges you face in communication and transparency related to shortages?

The biggest challenge I face in communication and transparency related to shortages is getting someone knowledgeable about the Viberzi shortage in Canada to answer the following question: "Will Viberzi will continue be available in Canada after January 1, 2024?"

What information from the industry on a shortage would you like to know?

The information from industry I would like to know is will Viberzi be available in Canada after January 1, 2024.

What is the most effective way for you to receive information on a drug or other health product shortage?

The most effective way for me to receive information on a drug shortage is posting information about the shortage on https://www.drugshortagescanada.ca/.

What type of information are you missing to respond to a shortage or shortage risk in a timely manner?

The type of information I am missing to respond to a shortage in a timely manner is an answer to whether Viberzi will continue be available in Canada after January 1, 2024, the date after which Viberzi expires from Health Canada's list of drugs for exceptional import and sale.

What type of support is needed to improve information sharing?

Health Canada and manufacturers should collaborate to inform patients who take Viberzi whether Viberzi will continue to be available in Canada after January 1, 2024, the date after which Viberzi expires from Health Canada's list of drugs for exceptional import and sale.

 

Edited August 12 by danb

[danb]

Hi all. I am still thinking about this issue and how we can determine whether Viberzi will continue to be available in Canada next year.

This evening I sent an email to my member of parliament asking him for help getting an answer from Health Canada about what will happen when Viberzi's designation as a "drug for exceptional import and sale" expires on January 1, 2024.

My suggestion is that every member of ibspatient.org who has a prescription for Viberzi email their own member of parliament and ask the same question. I have pasted my email below (with my name and address removed) in case it helps you compose your own email. You can find the contact information for your member of parliament by inputting your postal code on this page: https://www.ourcommons.ca/members/en/search

The reason I think all of us should do this is because if the Canadian Minister of Health's office gets a bunch of requests from our members of parliament asking whether Viberzi will be available in Canada after January 1, 2024 then people who work for the Minister of Health will know there are many Canadians who will be unhappy if Viberzi is no longer available in Canada. Knowing that may persuade someone in the Minister of Health's office to help us.

The more members of ibspatient.org that email their member of parliament, the more likely it is that someone in a position of power will help us. "The squeaky wheel gets the grease", as the saying goes, and we want to be a squeaky wheel. 😁

Quote

Dear <my member of parliament's name>,

My name is ≤my name≥ and I am a resident of your riding. I am writing to ask for your help getting some information from Health Canada.

I have a prescription for a medication named Viberzi. I want to know whether Viberzi will continue to be available in Canada after January 1, 2024 when Viberzi's place on Health Canada's list of drugs for exceptional import and sale expires.

My understanding is that there is a shortage of Viberzi in Canada. As a result, Viberzi is on Health Canada's list of drugs for exceptional import and sale: https://www.canada.ca/en/health-canada/services/drugs-health-products/drug-products/drug-shortages/list.html. The list states that January 1, 2024 is the date after which the drug may no longer be imported. I do not know whether Viberzi will continue to be available in Canada after that date.

Thank you for your help.

Sincerely,

<my name>
<my home address (to let the Member of Parliament confirm I live in their riding)>

[danb]

Today I received emails from both my member of parliament's office and from Health Canada. Neither one was particularly important. My MP's office said they're looking into the matter and Health Canada said my email was forwarded to the appropriate department. But I have decided to celebrate these small wins since, until now, trying to get my question answered felt like shouting into the void. 😆

[danb]

This afternoon I received a reply from my member of parliament's office. They forwarded this message to me from someone in Health Canada’s Regulatory Operations and Enforcement Branch:

Quote

Health Canada recognizes how important Viberzi is to the many Canadian patients who rely on it in the treatment of irritable bowel syndrome. Ensuring the people of Canada can get the medicines they need is one of Health Canada’s top priorities.

AbbVie is reporting shortages of their two strengths (75mg and 100mg) of Viberzi. The company reported that the shortages began in July and September 2022 with an unknown end-date. This is due to a shortage of one of the medicinal ingredients that is used to make the product.

To help mitigate the impacts of the shortage, Health Canada authorised AbbVie’s proposal to import US-authorized Viberzi into Canada. This is an exceptional and temporary measure to help maintain the supply of the drug for people requiring this drug in Canada.

Health Canada is closely monitoring the availability of the drug and is actively following up with the AbbVie and our health care system partners to determine when Canadian authorized product is back in sufficient supply to consider the product out of shortage. If the Canadian authorized product remains in shortage after January 1, 2024 we will not hesitate to take further action. For example, if more US-authorized Viberzi is available, the date currently included on the ‘List of drugs for exceptional importation and sale’ could be extended.

I think that is good news.