Story 44 Valproic Acid, Fluvoxamine, Topiramate

A woman from Calgary writes:

I personally have been impacted by a prescription drug shortage. In 2010, I was diagnosed with vestibular migraines, characterized by 24/7 severe and chronic vertigo. When the vertigo was most acute I could not go into stores or areas that were visually complex, I had trouble walking, and I had to rely upon others to do many tasks. I was diagnosed by a neurologist, and we tried several medications to treat the disorder without any success.

Finally, in 2011, valproic acid (an anticonvulsant) produced by Mylan helped partially control the symptoms – at least I got some relief and I could finally stand up and walk without falling over. But in 2012, my pharmacist informed me that Mylan would not be producing valproic acid and this shortage could last a year.

I had difficulty switching between brands (I got ill) so I had to remain on the Mylan brand that I was initially started on. The supply of valproic acid made by other pharmaceutical companies at that time was also very low so I had to consult with my neurologist and find a replacement medication. As I had a partial response with an anticonvulsant, he selected topiramate.

Switching medications was extremely difficult but the response to topiramate was worth it. It truly has been a life saving medication for me. I have had a 100 percent response to the medication. Given the severity of my symptoms I will need to be on this medication for life.

I never thought about drug shortages again until recently. My brother had been taking fluvoxamine that was prescribed by a psychiatrist to treat social anxiety disorder and obsessive compulsive disorder. Presently there is no fluvoxamine available in our city (Calgary). So his doctor had to decide on a different medication. I learned that there is also a shortage of Lithium.

The other day I was discussing my brother’s situation with my pharmacist and asked him if I should be worried about topiramate availability in Canada. I was quite surprised and rather upset when he answered “yes” – that topiramate is expected to be in short supply in the future. Without that medication I will be not be able to function. I am extremely worried about this situation and angry that it is happening and we don’t know why.

Story 43 Repeated & baffling shortages of specific painkiller

A 70 year-old reader from Toronto area writes:

I have been disabled by spinal cord injury and Multiple Sclerosis pain since 2006 and have Multiple Chemical Sensitivity.  I retired early because of this pain from the national office of a large health charity where I worked for over 25 years in senior positions in education and research. I also participated in consultations and collaborations with the federal government and other health charities and health professional organizations.

For years, I’ve been a patient at St Michael’s Hospital’s Pain and MS Clinics in Toronto under whose direction I’ve tried all available other pain control options.  They either don’t work for me, I have allergic reactions, or the side effects outweigh the value. The only pain medication I can tolerate for my severe MS and spinal cord injury pain contains nabilone and I take a high dose.  Luckily for me, it is non-addictive and unlike many medications, appears to have no dangerous side effects. Frankly, if I don’t have this medication, the pain will be unbearable.

However, it’s been in short supply since June 2017.  I assumed at first this was a glitch in the system but then realized the system is the glitch.

In June, 2017, my local independent pharmacist told me he could not fill my prescription because his supplier was out-of-stock but he knew Shopper’s Drug Mart had a supply. So I take my new 3 month prescription from St Mike’s Pain Clinic to Shopper’s.  My drug plan only permits one month supply at a time but for two months, Shopper supplies.  Then, when I need the third month in August, consternation from Shopper’s – their distributor cannot supply either the brand name or generic form of the drug until January, 2018.  However, that same local independent drug store I normally use now can get a quantity of the drug from its supplier so I had to get a brand new prescription from St. Mike’s.  The local drug store was able to provide the medication for three months, but then their distributor ran out of stock.  Meanwhile, through family members (not health professionals), I’d learned of another drug store that had a supply and St Mike’s sent a prescription there – however, they were now out-of-stock so they could only give me less than 2 weeks of supply.  I didn’t have enough to last until January so I reduced my daily dose to make them last longer but reverted back to my usual dose when I realized my savings only last a few days and meanwhile the pain increase was significant and my stress was affecting my family.

A new just-opened pharmacy we found had some inventory and was able to get me more when the Ontario government released a limited inventory of a small dose previously delisted.

The message from all of the drugstore staff I spoke to from June to December 2017 was that their suppliers said that the shortage would last until January, 2018 and their only advice was to call every drug store in Toronto to see if they have any stock left.  Unfortunately, most of the stores I found who had any at all were holding back supplies for their regular patients.

All of these pharmacists had no idea why the specific drug was in short supply but eventually I learned that there was a worldwide shortage of the active ingredient. By the end of December, 2017, various manufacturers had received approval from Health Canada for a substitute source (email communications) but one respondent honestly commented that no one could guarantee future shortages would not occur.

Story 42 Cancer chemo cancelled due to drug shortage

A woman in Ontario writes….
On Friday March 3rd, I was informed that my chemotherapy was cancelled because the drugs that are used in my treatment were not available. I was not told which drug.  I take four: Irinotecan, Leucovorin, Fluorouracil, and Avastin. I understand that some drugs were held because there was leakage, and that they have now been made available. But I have not been rescheduled for chemotherapy as yet. I am worried as it is important for me to receive this treatment. When I learn what is happening I will inform you.
 One week later: chemo found, and given.
Webmaster:
Thanks for the story!
Health Canada indicated that the affected drug was 5-Fluorouracil. Some vials had been found to be leaking and a batch had been held up. The ‘quarantined’ batch is now released and hopefully your treatment will be re-scheduled soon.
However some important points.
1. when one drug is unavailable usually the whole treatment must wait. It does not mean all the drugs are in shortage.
2. the drugshortages.ca tracking site indicates that Canada has experienced shortages in all 4 of these drugs since 2012–more frequently with the off-patent older drugs, than with the one on still patent (Avastin).
3. Cancer drug shortages are not new.

Story 41 A Solution to drug shortage?

Family physician, Dr. George Miller, long in practice in southwestern Ontario and a former President of the Ontario College of Family Physicians, writes in response to our CMAJ article with an excellent question that embodies a suggestion! We agree.

 

Dr Miller writes:

The CMAJ mentions that this has been a problem since 2010 but it has been present for long before that. Around 2006, the pharmacy in our building  started issuing a list of common drugs that could no longer be obtained, and as you have already noted, the list consisted exclusively of cheap, proven medications for which the patent had run out. They were all generic.  By the early 200s it was impossible to prescribe as simple an antibiotic as penicillin G or V, despite the fact that it was still effective in simple strep infections and cost pennies. I remember over 14 commonly-used medications being on one list including antiemetics, cheap antibiotics, and some of my epileptic patients had to visit numerous pharmacies to find medication that had kept them stable for years.

Even then we were were being told by the drug companies that the problem was “complex”, but I don’t think it is at all. It all boils down to what is most profitable to produce.

I think the solution is for our government to found a crown corporation to produce the common, proven cheap medications that the drug companies are unwilling or unable to provide. This would be on a non-profit basis. The benefits would be many. If doctors were able to prescribe proven and cheap medication for common conditions rather than blockbuster drugs, the cost to Provincial drug plans would decrease. Also the corporation would be able to export cheap, proven medication to third world countries in desperate need. I well remember a colleague of mine arriving in Africa as part of doctors without borders to find one bottle of tetracycline in the clinic for a population of over 2,000. Although such a crown corporation would make no profit, it would provide jobs for many people and could become an international Canadian industry.

Congratulations on your article in the CMAJ. I hope that you are able to effect change.

George B Miller
Family Physician & LTC (retired)

Story 40 Epival (divalproex) for bipolar disease

A psychiatrist in SW Ontario writes:

Yesterday, I had a long conversation with a local pharmacy and they are out of Epival, generic, until Feb 26 at the earliest.  They ordered in 125 mg tabs of the parent drug for my patient.  Nobody has 250 mg tabs and for many people, they will be unavailable.  Epival is one of the drugs used with Bipolar patients and is used extensively in Psychiatry for other problems.  I am haunted by the thought of a number of previously stable people becoming ill through this problem.

Story 39 Drugs for Depression and Anxiety

A woman from British Columbia writes …”I am so scared that I can’t function.” She continues:

Do you realise that drug manufacturers and wholesalers do not contact pharmacies when there’s a drug shortage or outage?

If you personally don’t keep on top of your meds, you could go to get your prescription filled as I did for my anti-anxiety drug, clonazepam, and found out “Sorry Discontinued”!

Shock, anxiety, and fear!!! What do I do now, when the doctor says don’t change brands, and even different brands are out too.

I also need divalproex to treat symptoms associated with severe depression. Without this medication I am back in hospital and going through shock treatments to get on another med. This drug divalproex gave me my life back, without it I have no life.

Another anti-depression med is out until May 2016, you just can’t stop these drugs! So that’s 3 meds in a year I’ve had to deal with.

The first discontinued drug change,,,,, caused me to have flu like symptoms for 6 days, not knowing if that god awful feeling was to abate I lived in fear, but it did stop.

But I can’t be lucky enough to change over that easy with others, I attempted suicide in 1998 because nothing helped, hospitalised and a great doctor put me on the right path!

I don’t need to loose my life over a drug shortage that can be prevented.

Most pills and raw materials come from foreign countries like India, China and Israel, who go through natural disasters, wars and  manufacturing issues.

Right now people are running out of their heart, cancer and mental illness drugs – meaning without those medications you become very sick or worse!

Since 2014 over 300 medications have been discontinued, 200 resolved and as of November 5th 2015, there are over 700 drugs out of stock!

Some are estimated to be back in stock as far as August 2016 that are still being made, how do you last that long on a month to month prescription? I just noted on the website, one drug is out until December 2016. Yikes!

Why isn’t the government looking into this, the FDA and CANADA HEALTH REGULATIONS have to pass these out of country meds too, which takes even longer to see if they are up to standard qualities.

One of my meds has been out 10 months and now two are due in, in May 2016, and that’s an estimate only and if I didn’t keep on top of things I’d be very sick and back in hospital, and it still could happen!

So if you want to keep updated on what’s going on go to—www.drugshortages.ca—-and register and keep in touch  with your doctor and pharmacist.
THE CANADIAN DRUG SHORTAGE DATA BASE.

I’m lucky to have this knowledge and a great  pharmacy that looks after me with a good doctor that orders  a stock pile of meds so I try not to run out.

You know who you are and I thank you from the bottom of my heart.

Story 38 Acetazolamide

A woman from Ontario writes:
 
My mother, a retired homemaker, is a 78-year old survivor of Dandy-Walker syndrome a form of congenital hydrocephalus. She was born in 1937, long before the condition was identified and long before the invention of shunting as a control measure. The actual diagnosis was not made until 2007.
 
She was hydrocephalic at birth and didn’t meet her milestones on time, but intellectually she was otherwise OK. After months of intolerable head pain and even leakage of cerebrospinal fluid through her ears and eyes,  she fell into a coma at the age of 6. She underwent risky cranial surgery to alleviate the pressure. She survived the surgery, but continued in a coma for some weeks. When she finally regained consciousness, she was blind and had to relearn how to walk, feed herself, speak, and so on.
 
Eventually, she regained the sight in one eye, but was always plagued with weakness on her right side and balance issues as well as headaches. She married and had me at age 19 in 1957. Her husband died in 2007. She now lives in a retirement home.
 
For about 8 years she’s been under the care of a neurologist who prescribed Acetazolamide to control the intracranial pressure. It’s been a godsend. Surgery at her age has been ruled out as far too risky. So, the only thing that allows her to control the fluid balance in her brain, and the pain, is Acetazolamide, four 250mg tablets per day.
 
I was truly shocked 2 weeks ago to be suddenly told by her pharmacy that they couldn’t fill her prescription and that I was on my own to find a supply.  I was stunned and terrified. What if I couldn’t find any? My mother can’t do this herself. She is mostly blind, mostly deaf, and mostly immobile. She couldn’t call around. It was up to me.
 
I called her GP. She was unavailable but her staff confirmed that it was up to me to find more. I asked how I was supposed to secure the drugs since I didn’t have a prescription? I was told that first I had to call or visit pharmacies and confirm a supply. Then I had to call the GP’s office and provide them with the appropriate fax number and then they would fax the prescription. Then I would go to the pharmacy, pay, and pick it up. Right. 
 
After calling around for most of the morning, while at work, because I was informed, on a Friday, of the lack of meds with only ONE DAY left in my mother’s supply. I was panicked. You can’t just go from 4 pills to zero pills in one day.
 
I managed to find one pharmacy with 5 individual pills in stock. I called my mother’s neurologist to beg him to tell me if he knew of a supply or at least prescribe a substitute. I couldn’t get past his receptionist. I called my mother’s GP and threw myself on the mercy of the receptionist. She called a local hospital pharmacy for me and secured a supply enough to last 2 weeks. The she found a tiny drug store in the west end of town up the street from their office and they had enough for another 2 weeks.
 
Many calls and false starts later, I got the meds and now mum is good until the end of July. I am hoping that this is enough to last her until the manufacturer resupplies the drug stores. I was told that the date might be July 10 or maybe “sometime in August.” Right.
 
I dread having to go through all this again. Placing the onus on the patient is just wrong. What if my mother didn’t have an advocate like me? I can tell you that I was in agony while trying to sort all this out. The pressure, the responsibility, the feeling that I’d been thrown into the deep end holding an anvil, was overwhelming. There has got to be a better system in place.

Story 37 Triazolam for conscious sedation

A dentist in eastern Ontario reports that triazolam has not been available for conscious sedation during dental procedures for about six months.

Story 36 Cefixime for gonorrhoea

On 26 September, posted this announcement:

The Public Health Agency of Canada (the Agency) has been made aware of a national cefixime shortage which is expected to last until September 2015. There is only one Canadian supplier of cefixime at present; however, the shortage is a result of a problem with a third party manufacturer.

Gonococcal infections have shown progressive resistance to penicillin, tetracycline, and quinolones; third generation oral and injectable cephalosporins are the last remaining first-line treatments. As one of the recommended treatments for gonococcal infections, the shortage of cefixime hinders our efforts to control this infection.

 

Story 35 BCG for bladder cancer

A urologist working in an academic health centre writes:
We are indeed affected by the BCG shortage. We understand that Cancer Care Ontario is working on some recommendations for managing short supplies, and we have discussed our options in our group.
We have been told that our supply is ++ constrained and that future patients (for the time being), will need either a dosage decrease or a substituted drug, mitomycin C (neither as effective in studies).
The backorder is supposed to be resolved in late October.