A Vernon woman struggling with Cystic Fibrosis is still waiting for the provincial government to approve a drug she says will make her life much easier.
When Melissa Verleg was taking Orkambi she was doing well, but her husband’s work medical benefits no longer cover it and the provincial government continues to refuse to cover it.
Since coming off Orkambi in January, Melissa has become sicker.
“I’ve lost 12 per cent lung function in the last three months. All my symptoms are exasperated. They’re out of control again. I did 25 days of home antibiotics trying to control the lung infection.”
She’s also a heavy dose prednisone steroids for three weeks at a time.
Orkambi costs about 250 thousand dollars a year.
“They’re ignoring us still. Basically, the drug is under review again through CADTH, which is great, but they won’t help me until that review comes back and that’s not set to come back until August 1st.”
The Common Drug Review Board rejected the drug earlier, feeling it’s efficacy wasn’t approved.
Meilissa says Cystic Fibrosis experts across the country support the drug, which costs about 250 thousand dollars a year to take.
It’s also been approved by Health Canada.
Quebec is the only place in Canada that will fund Orkambi under a special authorization program.
Melissa has been housebound for the past month, unable to walk up and down stairs but is able to manage slightly better right now.
“But I’m not doing anything. I no longer can attend the gym. I can’t really go out grocery shopping. I can pick up a couple of items but there’s no way I could push a full shopping cart. So my days consist of, you know, just hanging out, watching some TV.”
As for her prognosis, Melissa is trying to stay as positive as possible.
She says her doctors are looking for anything that can help her, but even a month ago were not sure how she was going to do.
“The prognosis right now is I just get sicker and sicker until I die or get a double lung transplant. That’s the only prognosis I have now. And that could be one more cold or that could be five years depending on how I manage.”
Melissa’s not eligible for a transplant at this point.
A GoFundMe page raised some money but not enough to pay or Orkambi.
She’s used it to help pay for the antibiotics that she takes to help her get through her days.
Melissa notes May is Cystic Fibrosis Awareness Month and hopes her plight and that of others with the disease is not forgotten.
CJIB News asked for are a response from the BC Ministry of Health and was provided the following statement.
“British Columbia is committed to an evidence-based process that includes at its centre the Common Drug Review’s (CDR) determinations of a drug’s clinical efficacy and cost effectiveness.”
“Vertex, which is charging $250,000 per year per patient for this drug, has indicated that it has new data about Orkambi that may impact the CDR’s previous recommendations. The Ministry worked to advocate for a change to the rules of the Common Drug Review so that the company could present this data, and it has agreed to make this change. We also encouraged the manufacturer to make a resubmission to the CDR under the revised rules, which it has done.
“The resubmission to the CDR doesn’t guarantee that the drug will be approved. Decisions are going to be made based on the evidence and by health professionals – not politically.
“All jurisdictions respect the CDR process.”