Now that her son’s cystic fibrosis (CF) drug is no longer being covered by the province’s drug plan, Glenys Tuttle is asking the Department of Health to show compassion for the 10 patients it could benefit.
“This is what I can’t see when I am listening to the news and I hear they are putting millions for this project and billions for something else. This is my son’s life I am talking about,” the Shearstown woman said Friday.
Like about 10 other patients who don’t have private drug coverage, Bradley Tuttle was able to use a drug called TOBI for the past year.
In October 2012, The Telegram first reported on the CF drug issue when John Hawboldt, pharmacist on the cystic fibrosis team and a professor at MUN’s school of pharmacy, said approval of the drug TOBI for CF patients would benefit them and cut hospital admissions.
The drug was being covered for the past year under the provincial drug plan for CF patients who need it because of a national shortage of IV Tobramycin.
But because the backlog problem has cleared up, Hawboldt said Friday the patients have been cut off from coverage for TOBI, although he said there has been no official memo from government.
The Department of Health has told The Telegram previously that once the shortage of IV Tobramycin was corrected, TOBI will no longer be a covered drug. A spokesman said Friday the IV tobramycin formulation is what is now covered under the drug program.
Tobramycin by inhalation is used in CF patients to treat acute exacerbations of lung infection and fight chronic pseudomonas aeruginosa infection.
Cystic fibrosis is a genetic disorder present from birth. With advances in medicine, half of all Canadians with cystic fibrosis are expected to live into their 40s and beyond, according to Cystic Fibrosis Canada’s website. Besides difficulty breathing and respiratory tract problems, the disease is characterized by severe, chronic lung infection. Patients also require a high-calorie diet, have extreme difficulty digesting food and must take pancreatic enzymes with their meals to absorb nutrients.
Patients take the drug on a cycle — twice a day for a month, followed by a month off it.
TOBI and the much less cumbersome TOBI Podhaler cost $18,000 a year, Hawboldt said in the previous interview.
Used in its most beneficial dose, TOBI costs three times that of IV Tobramycin, he said.
While TOBI is a time saver from Tobramycin, the TOBI Podhaler form takes just five minutes.
TOBI and TOBI Podhaler would lead to better adherence to therapy by CF patients, Hawboldt and some patients have said in previous interviews. The drug regime is in addition to other therapy they must participate in as well as trying to stay active. Proper nutrition is also crucial, so the daily routine to stay healthy is time-consuming for CF patients.
Not following the antibiotic regime leads to lung decline, but it’s gradual, so CF patients don’t notice how sick they are getting until they hit a wall and need to be hospitalized, Hawboldt has said.
Several other provinces cover TOBI, Hawboldt noted. Only one of the Atlantic provinces — New Brunswick — pays for it through its provincial drug plan by special authorization.
TOBI was reviewed by the Atlantic Common Drug Review in 2007 and 2011 and the outcome was the recommendation that coverage not be reimbursed through a provincial prescription drug program.
In a statement Friday, the department said “The provincial government relies on evidence-based recommendations provided by experts in their fields when considering policy changes. The Atlantic Expert Advisory Committee does not support coverage of TOBI under the Newfoundland and Labrador Prescription Drug Program.”
Hawboldt disagrees with that expert opinion.
And for Glenys Tuttle, the evidence is clear from her son’s experience.
He works part time and took night shifts because it’s easier to manage the time for his medications and therapy, she said. He doesn’t have benefits.
Tuttle said when he was previously using Tobramycin, she had to wash down his room after each use because the mist sticks to everything.
She said her son wrote Health Minister Susan Sullivan and former health minister Jerome Kennedy, now the finance minister, pleading the case for TOBI.
“The government will say ‘it’s going to cost this, it’s going to cost that and it’s a lot of money.’ Ten patients that need it. … It just comes down to the point, for me, it’s my son. It’s his health,” Tuttle said.
“Now for him to be on the good drug TOBI and now to have all of a sudden government decide, ‘No you can’t have that anymore’ and put you back on the Tobramycin, which is going to be less effective for his lungs … to this government it’s the dollar signs. How can you put dollar signs on a person’s life?”
“If we did a proper cost-effectiveness analysis, we would find that this drug, although having significant upfront cost, reduces costs because it keeps our patients out of the health care system. It keeps them healthier,” Hawboldt said.
“They work, they pay taxes, they buy things. They put money into the economy as opposed to taking money out of the economy by being sick.”