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.

 

Story 34 Paclitaxel

A pharmacist in a cancer treatment centre reports that his hospital’s stock of cancer chemotherapy drug, paclitaxel, produced by the Canadian firm Biolyse, has run out. Soon an order will be placed with the American firm, Hospira.

The Hospira price for a treatment is $4000 — whereas the Biolyse price is $50.
The increased, unexpected, annual cost to his institution will be over $2M.

Health Canada inspectors revoked the licence of  Biolyse because of publicly unspecified safety violations,  and it had to stop production.

The pharmacist asks the following questions, which we cannot answer:

1. If safety had really been violated, why were pharmacies allowed to use up the remaining stock presumably made under the same “unacceptable” conditions?

2. Why is the American firm’s price for this drug 80 [EIGHTY!] times that of the Canadian company?

3. What are the real costs of manufacturing this drug?

Story 33 Delatestryl (Testosterone enanthate)

My current story begins when I went to get my prescription refill that I pickup every few months.  I had called the refill in a few days prior to go pick-up later.  When I went to get my prescription at the pharmacy they told me that they did not have any of the drug and therefore could not fill my prescription. The pharmacist also said that they are not able to order any, that it was on back order and that they may not be able to get any until June.
This has happened before in the past with this medication and thankfully it is not immediately life threatening. It is a therapeutic long term treatment that if I do not take it for a long time can cause problems for me.  This drug is a brand name drug from Valeant Canada.
There are alternatives, but often with a shortage of this medication the one that is the best alternative is also in shortage and the other alternatives are very ineffective and/or costly.
Last time there was a shortage I had to use a very poor replacement in capsule form and it was not very effective and it caused me to have stomach upset. The other alternatives are very high priced and also not as effective.
Also, last time the shortage happened the product was just sold to Valeant from another company and I found out later that they had said it was a supply issue with ingredients and that they were not able to produce the medication. This time I have not found any information about why there is a shortage and why it is on back order.
Learning my lesson from the last time this happened and got stuck with poor options, I called around to a few pharmacies and asked if they had stock or could order. The first pharmacy that I called had it in stock, so I immediately called my Doctor’s office and left a message to request that they transfer my prescription or write a new one to the other pharmacy and explained the situation. My doctor actually sent them a double request in case the problem continues longer than June. It was for a  5 months instead of 2.5 months (2.5 is usually how long the product usually lasts) this was also because I will be taking this drug long term.
Once the pharmacy received the prescription from my doctor, they called and said they had to order the medication (I guess that they used up what they had when I had called). I begin to wonder, if they can to order it then why could the other pharmacy not order it? Could the second pharmacy have a warehouse with older stock, but my regular one just has none? I honestly really don’t know how that works.
They were not able to fill the complete prescription because the medication came prefab from the manufacturer with an expiry date set to expire around June and that is how long I will be using it before I need another.
Thankfully my problem is not directly life threatening if I miss a dose. I was also able to get some of the drug with considerable effort. If I had waited even a few days I may not have been so lucky.
Anyone who may be having the same issue should look into compounding
pharmacies. Sometimes it is possible to get a replacement drug that way
depending on what the drug is.

 

Story 32 Haloperidol and Lorazepam injectables

The Centre for Addiction and Mental Health in Toronto as well as other hospitals are encountering extreme shortages of two very important and potent injectable pharmaceutical products.  The product is Haloperidol LA 50 and 100 mg/ml intramuscular injection used as an antipsychotic agent.  Possible availability for the latter is sometime in December; the former has no expected delivery date.  In addition, the anxiety reducing Lorazepam 4 mg/ml, 1 ml vials is unavailable until sometime in December as well.  Pharmacist-led discussions and communication is occurring with clinicians to determine best possible alternatives for patients, including those that have been stabilized on the long acting antipsychotic, Haloperidol.

Wayne Marigold, Director, Pharmaceutical Services

Centre for Addiction and Mental Health (CAMH)

Story 31 Topical ear and eye treatment

An Ontario GP reports

Garamycin (otic and ophthalmic) and topical trentinoin are no longer available.

 

Story 30 Proctosedyl for hemorrhoids

A 63 year old man wrote in late June and again in mid-August 2013:

Proctosedyl suppository (cinchoncaine and hydrocortisone) is not available in my Ontario city, and the manufacturer claims to have been having trouble making it. My pharmacist has been unable to find it or any substitute. He said that they hoped to have supply again in the first or second week of July. In another province where we went on holiday the local pharmacy did not have it, but had a different version as a substitute (proctol).

When I got home, my pharmacy and all the other ones in its chain in my city had neither proctosedyl nor proctol. I tried another chain. They did not have it. In mid-August, an independent pharmacy had only one small box of proctosedyl left and could not get any more, but was able to order in proctol.

The pharmacists called their suppliers — one had proctor the other did not. Therefore I wonder what is going on at the level of the distribution network.

This has been going on for two months (August 18).

Story 29 Tissue Plasminogen Activator (tPA) for stroke

A neurologist from Calgary reports that on 30 April 2013 Hoffman-LaRoche announced a shortage of tPA, an injectable drug used to treat acute stroke by breaking down clots. It is an old reliable drug  first approved for use by US FDA in 1996.

Neurologists were given just one week’s notice and told that they can expect the shortage to last two weeks.

An alternative drug is available but it is not yet approved for use in Canada, although it may eventually prove to be superior to tPA. Neurologists are advised to obtain consent from their patients prior to using the unapproved treatment.