April 2019

Advocating for you
Sharon Lee, Executive Director, CPFF meets with MPP John Fraser
With a new government in Ontario, CPFF has been busy this winter meeting with elected officials and public servants to see how we can work with them to help solve some of the challenges faced by Ontarians, and all Canadians, living with pulmonary fibrosis.
The timing of these meetings is critical. March is when governments often allocate any funds remaining in their 2018-2019 budget, which ends on
March 31, as well as approve the upcoming provincial budget for 2019-2020.
In its March report of Pre-Budget Consultation 2019, Ontario’s Standing Committee on Finance and Economic Affairs did make note of CPFF’s request for $1 million (in 2019) to establish a patient and treatment registry and $100,000 (in 2019) for support groups in underserved areas. “While this does not indicate funding,” says Lee, “we are pleased that our requests have been acknowledged in this report.”

Sharon Lee, Executive Director, CPFF meets with MPP Doug Downey
In presentations to government representatives, Lee highlighted how our requests, for people living with pulmonary fibrosis, provided solutions to some of the broader challenges outlined in the 1st Interim Report from the Premier’s Council on Improving Healthcare and Ending Hallway Medicine of January 2019.

At the beginning of this report, a letter from Dr. Devlin, Chair of this Premier’s Council states: “Our objective is to help ensure Ontarians have a health care system that has the right mix of health care professionals, the right number of hospital and long-term care beds, and that care is available when and where it’s needed.”

The report also indicates: “A pressing need to integrate care around the patient and across providers in a way that makes sense in each of our communities in the province, and improves health outcomes for Ontarians.”

CPFF’s request for $1 million per year for five years to establish a provincial registry of pulmonary fibrosis patients, treatments and best practices, certainly aligns with the Premier’s Council report. “We believe that the design and delivery of new and effective treatments and services can best be done when health providers have access to much-needed data on those patients already suffering from pulmonary fibrosis,” says Lee. “Such a registry could also stand as an example to other provinces going forward,” she adds.

CPFF also asked for $100,000 for patient support groups, in the north of the province, in the Golden Horseshoe and in West Toronto. These educational and support groups assist patients, their primary caregivers and others in their support network. Attendance or participation in the groups by ILD (Interstitial Lung Disease) nurses or other health professionals can also help re-allocate some health care resources by addressing many patient concerns in a supportive environment, rather than in a clinic, hospital or respirologist’s office.

In addition to CPFF’s requests, Executive Director Sharon Lee shared with government representatives an overview of the organization, its mission and activities, as well as the impact the disease has on individuals, their families and the health care system.

Lee met with the following government representatives during the last two months:

February 1. Kailey Vokes from the office of the Minister of Finance.

March 1. MPP Stan Cho, member of the Finance committee.

March 6. MPP John Fraser, Interim Liberal Leader.

March 6. MPP Stephen Crawford, member of the Finance committee.

March 14. Charles Lamman, Director of Policy and Laurel Brazill, Director of Stakeholder Relations, from the office of the Minister of Health.

March 20. MPP Doug Downey, Parliamentary Assistant, Ministry of Finance.

Lee also met MP Frank Baylis at a fund development event held in Montreal on March 16.

Nova Scotia to review financial support for lung transplant patients

Kirk Morrison, President, CPFF
The Canadian Pulmonary Fibrosis Foundation (CPFF) welcomes the news that the Nova Scotia government will be reviewing the amount of money given to lung transplant patients each month to cover living expenses while in Toronto awaiting the life-saving surgery.

“We know that many Canadians living with Pulmonary Fibrosis, who receive lung

transplants, experience extreme hardship if they live outside of the larger cities that have transplant centres. Many struggle to cover expenses for accommodation, food and transportation in a large urban centre, while maintaining their regular family living expenses at home too,” says Kirk Morrison, President, CPFF. “We welcome this review by Nova Scotia and urge other provinces and territories to address similar gaps for people undergoing lung transplants.”

Nova Scotia Health Minister Randy Delorey announced the review on March 14, following news coverage by the CBC of the financial difficulties many lung transplant patients face while awaiting lung transplant surgery. Nova Scotians currently receive $1,500 per month to cover their living costs, which only covers about half of their out-of-province living expenses in the expensive Ontario city.

Atlantic residents must move to Toronto, the closest place doing lung transplants, because donated lungs can only live outside the body for several hours, which means transplant candidates must be nearby. Patients typically need to move to Toronto for an average of six months until a match is found, and then remain for another three during the long post-transplant recovery period.

CPFF will write a letter to the Nova Scotia Health Minister supporting the government’s review and an increase to the living allowance for lung transplant patients.

A letter of hope from a lung transplant recipient
Our journey with idiopathic pulmonary fibrosis.
I titled this letter, “our journey,” rather than “my journey,” because my wife Shirley, my family and my friends came with me on this journey.

It started in May 2017 when I was diagnosed with IPF and was told that I had between two to five years to live. With the help of a wonderful respirologist and certain drugs we were able to keep the disease’s progress to a slow pace.

Harold Davis
Our respirologist also connected us to Toronto General Hospital in Toronto, to begin the six-month process to get on the lung transplant recipient list.

They gave us a very large binder to read about IPF and the details of what is involved in undergoing a lung transplant. After reading it, you are almost reluctant to proceed. You will be giving up about a year of your life to getting a new lung, healing and doing lots of physiotherapy.

I received a single lung and I feel like a new man – full of energy. Whether this feeling lasts two years, or ten years, my quality of life without dragging those oxygen tanks around will be well worth it. And, I can finally golf without an oxygen tank on my back.

I love my wife, family and friends and I am not ready to leave them. Please, please try your best to get on the lung transplant list. Don’t give up; it will be a hard road.

There are more organ donations than ever so the chances of getting a lung are good. And, I am more than grateful to the family of the lung donor for their gift of life.

All the best,
Harold Davis and his support team (Make sure you have one).

Parkash Kaur Ahluwalia Maloni event celebrates success and raises more for research

As a thank you to donors, brothers Parvinder and Narvinder Maloni, along with friends and family, celebrated the success to date of their $70,000 fundraising efforts (half from donors and matched by the brothers) earmarked for pulmonary fibrosis research in honour of their mother Parkash.

Held on March 16 at Pür&Simple in Dorval, Quebec, 80 people attended the event, which raised a further $4,000, including a silent auction featuring a painting donated by Alain Boucher, himself a lung transplant recipient.

Parvinder Maloni believes it was his late mother’s intervention that sent him the life-saving gift of a donor lung on Mother’s Day, 2018, five years after his diagnosis with pulmonary fibrosis. It was a medical intervention that was not available to his mother Parkash Kaur Ahluwalia Maloni, when she succumbed to the same disease in 1997 at the age of 73.

“Our breath is life and my mother was the breath that gave life to her family and all the generations and friendships that came from her love. And even after death, she continues to watch over our whole family and she blessed me in my greatest time of need,” says Parvinder.

In honour of his mother, Parvinder established the Parkash Kaur Ahluwalia Legacy Fund with the Canadian Pulmonary Fibrosis Foundation (CPFF). “The legacy will fund two $20,000 CPFF grant, enabling pulmonary fibrosis research,” said Kirk Morrison, CPFF Board Chair and President. “We are exceptionally grateful to everyone who contributed to this fund honouring Parkash Maloni, especially her two sons, who matched the support they gathered from other donors.”

Sikhs, like the Malonis, have a tradition called “seva,” which is displayed through philanthropic, voluntary and selfless service. Ranjena Maloni, Narinder’s daughter and a CPFF Board member, along with Anika Maloni, Parvinder’s daughter, expressed how proud they were of their fathers’ example of seva to their family and their community.

(L to R) Parvinder, Ranjena and Narvinder Maloni with Sharon Lee celebrate $70,000 in fundraising success at a Montreal event last month.
Ask your community today to support Pulmonary Fibrosis Month

 BC Place lit for Pulmonary Fibrosis Month in 2018
September is Pulmonary Fibrosis Month. We all know that large organizations and governments need time to approve requests from their communities. And the process can slow down even more during the summer months. If you want your town or province to issue a proclamation in time for Pulmonary Fibrosis Month, make your request this month. Be sure to contact CPFF’s Sharon Lee at [email protected] and she will assist you with your request on behalf of CPFF and make sure only one request is being made to each province and/or municipality.

You may also want to ask local and regional landmarks to display support for Pulmonary Fibrosis Month in September with red and blue lighting or a message. Again, making your request as soon as possible increases your chance of a favourable response. Sharon will be happy to help with your request and also ensure that only one request is received from CPFF. You can reach her at [email protected].