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LETTER OF THE WEEK: ALS patients will flounder without funds


Kimberly Carter and Deana Davis look on as Bill Duff, who lives with ALS, speaks during a news conference at Province House in Halifax in November 2018. Carter is president and CEO of the ALS Society of New Brunswick and Nova Scotia, and Davis lost her husband to ALS in 2015. - Tim Krochak
Kimberly Carter and Deana Davis look on as Bill Duff, who lives with ALS, speaks during a news conference at Province House in Halifax in November 2018. Carter is president and CEO of the ALS Society of New Brunswick and Nova Scotia, and Davis lost her husband to ALS in 2015. - Tim Krochak

For 11 years now, I have had the very great privilege and very great heartache of serving people living with ALS. The very great privilege of bearing witness to the grace, strength and courage of families living with this terrible disease. The very great heartache of having such a big job of supporting them in a meaningful way with so few resources. I am joined in service by an amazing staff, volunteer board and countless volunteers and donors.

For over 40 years, we have served the people of Nova Scotia and then Nova Scotia and New Brunswick with no government funding — none!

We cannot change the outcome of ALS, but we can help people live their best lives as well as they can, as long as they can. The average person with ALS borrows from the ALS Society of New Brunswick and Nova Scotia five pieces of equipment valued at a total of $70,000. One wheelchair can cost $40,000. A piece of breathing equipment can cost $8,000. By loaning this equipment at no cost to families, what we are really loaning is time. Time to walk/wheel a daughter down the aisle. Time to welcome a grandchild into the world. Time to discover life; our youngest client is 25 years old.

The ALS society saves the provincial government countless dollars by allowing people with ALS to live at home longer. It has asked the Nova Scotia government for $140,000 in the 2019-20 budget. Without investing in new equipment, it costs the society $500,000 to keep operating. It was our hope that the Nova Scotia government would take some leadership, and that New Brunswick would follow suit with the same amount of funding.

People with ALS and their families support the society in every way they can. But consider this: People with ALS lose their jobs quite early on in the disease, and most often their spouses stop work to care for them. Eventually, care is 24-7, with caregivers needing to be up several times during the night. There is minimal support available in terms of home care. Feeding tube formula is $800 a month. Homes need renovations to be accessible.

The ALS society takes care of 60-80 families every year in each province. It works out to be about $4,100 a person per year or about $11 a day. The cost to stay in a long-term-care facility is $52 a day/$19,000 a year.

The government has announced $70 million for a new art gallery. This is not a comment on the value of arts and culture. It is, however, a comment on the value of human life. On the quality of life lived.

Here, at the ALS society, we have people making life-and-death decisions, not based on whether they wish to continue to go on, but on whether they can afford to. We need a commitment from both the New Brunswick and Nova Scotia governments immediately! We cannot continue to offer our much-needed equipment-loan program and other services without government funding.

Kimberly Carter is president and CEO of the ALS Society of New Brunswick and Nova Scotia (alsnbns.ca)

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