Hoping for breathing room; Corner Brook woman with rare lung disease lobbying for drug funding

Cory Hurley cory.hurley@tc.tc
Published on September 8, 2014
Lori-Lee Samson is photographed at her home in Corner Brook Thursday, Sept. 4, 2014.
Geraldine Brophy

Lori-Lee Samson would like to say she can breathe a little easier this week, but that’s not quite the case.

The Corner Brook woman has a rare, progressive and ultimately fatal lung disease. She is hoping approval in Ontario for public funding of the disease’s first drug treatment will open airways in other provinces  — specifically Newfoundland and Labrador.

Samson, a mother of three, was diagnosed with idiopathic pulmonary fibrosis about nine years ago. Patients who suffer scarring of the lungs, hindering their ability to breathe, typically die within two to five years without treatment or a lung transplant.

She has been fortunate the disease has remained within the mild-to-moderate level since her diagnosis — a rare circumstance.

Patients, caregivers and doctors have advocated to provincial governments after the Common Drug Review recommended in October 2012 that provinces not publicly fund Esbriet. Ontario is the first province to approve funding for the drug — which has been estimated to cost as much as $45,000 per year — that treats adults with the disease in the mild-to-moderate stage.

Since the devastation of the diagnosis, life has been a roller coaster ride for Samson. The lows included struggles with depression from facing a debilitating and fatal disease. The highs have been a new lifestyle of healthy eating and regular exercise.

She gained hope through her participation in a study on the drug Bosentan, from which she felt positive impacts, but she suffered the agony after its failure.

Along came Esbriet, which is now touted as the only form of drug treatment for the disease.

Expectations returned. She is a suitable candidate, but public funding was not approved. The hurt returned.

“It is very devastating knowing there is a drug out there that can help you, but you can’t get it,” Samson said. “There are no words to actually describe how that feels.”

Approval of access to Esbriet for patients who meet the criteria, and who rely on the Ontario Public Drugs Program, is only a glimmer of hope for Samson and her three children. It is still not available in any other province.

“It creates hope,” she said. “But knowing my time may run out before I can get it makes it only hope.”

The single mother of 15- and 18-year-old daughters and an 11-year-old son contemplates moving to Ontario if she can avail of the funding. Her daughter Jasmine, a Level 1 student at Corner Brook Regional High, has asked her to move.

Mom — who says she overcame the devastation of her diagnosis with a determination to live her life to the fullest and cherish her children — doesn’t have just herself to consider. While it may be an option, she says her family’s life is in Corner Brook.

Samson has spoken to her member of government, Vaughn Granter, about the urgency to have this drug approved in Newfoundland and Labrador. Having been informed there is a process to follow, she waits. She knows that wait could come at a cost.

She wonders if those decision-makers understand the consequences.

She says she cannot imagine the lives of her children without her.

“It is very scary,” she said.

So, she will keep living each day to the fullest. “Packing up” the negative thoughts, and “putting them away.”

She hopes, someday, the breathing will come a little easier.

Awaiting a lung transplant

About 17 months ago, Debbie Mullins of Corner Brook — another person diagnosed with idiopathic pulmonary fibrosis — spoke publicly about the impacts of the lung disease on her life.

Mullins lobbied the provincial government to approve funding for Esbriet.

Today, she is in the intensive care unit of an Ontario hospital. She is on a wait list for a lung transplant. It was something she feared, and wanted to avoid.

A lung transplant may be an eventuality for Lori-Lee Samson too. She fears the risks of surgery and the possible complications of such a transplant.

Right now, while Samson is an ideal candidate for Esbriet, she doesn’t know how much longer that will be the case. Her disease could progress.

Progress being made toward provincial coverage

Newfoundland and Labrador’s Department of Health and Community Service is considering requests for coverage of Esbriet to treat idiopathic pulmonary fibrosis.

A spokesperson revealed details of the progress to The Western Star via email Thursday.

The department is in the process of finalizing its agreement with Intermune to add Esbriet as a benefit under the Newfoundland and Labrador Prescription Drug Program (NLPDP). Representatives of the program will also be co-ordinating requests for coverage with Intermune’s “Inspiration” patient access program.

In addition to making a request for coverage to the program, residents requiring coverage of Esbriet should also register with the Inspiration program by calling 1-855-547-3227 to gain access to a number of related supportive services offered.

The spokesperson also stated the department has encouraged the manufacturer of Esbriet to resubmit its product to the Common Drug Review for reconsideration if additional evidence becomes available. With additional clinical study data soon available, the company is expected to resubmit in the coming months.

The Pan Canadian Pricing Alliance has continued to work with Intermune on options for making the product available under public drug plans, the email states.

A letter of intent was signed to define the terms that participating jurisdictions will list Esbriet as a benefit while being reconsidered.