Thank you Madam Chair and good morning. My name is Nigel Van Loan. I want to thank you for inviting me here today.
I am a member of the ALS Society of Canada. I used to be the President of the ALS Society of Ontario. Why? Because in November 1999, my wife Patricia developed ALS. Our life as we knew it changed dramatically the day of her diagnosis.
I became a caregiver on that day, taking on an ever-increasing role as supporter and provider of moral and physical assistance to a loved one. Please note that I didn't use the word “burden”: that term has no place in describing the relationship that grows and exists between an afflicted person and her or his caregivers.
If there can be any good news in our story, it is that ALS progressed relatively slowly in Patricia, so that we had more time than most to adjust and arrange for the appropriate assists and aids to be in place in time to be of use. Conversely, recently I was aiding a gentleman here in Ottawa stricken by ALS, and his disease progressed so quickly that support equipment was arriving just before his deteriorating condition demanded moving on to the next level. That's ALS for you: no two cases alike.
It was of unbelievable help that Patricia was a qualified social worker who had spent much of the last 15 years supporting and caring for people with ALS and Alzheimer's. She was an expert in navigating and utilizing the very parts of the health care system upon which we had now become dependent. Thank goodness, because there is nothing more obscure, obtuse, and indecipherable than our current support system for longer-term, terminal diseases such as ALS. The medical model pursues cure as the holy grail, but is very weak on care.
This past weekend I attended the Canadian Hospice Palliative Care Conference here in Ottawa and was relieved to find a growing body of evidence that inroads are being made, that the benefits of the ethos of palliative care are spreading, albeit slowly, to those suffering from life-threatening and life-ending diseases, not only just at end-of-life, but soon after diagnosis, which can be months or years before death.
On a related note, although I can grudgingly admit that there are tiny signs of progress, it still seems to be beyond our ability to realize that providing proper home care would lessen the overall costs of the medical system, freeing up acute care beds for those truly in need of such care. But thanks to Patricia's knowledge and guidance to me, often necessary, we were able to make our way through her seven years of progressive debilitation with a good degree of quality of life and a bearable level of financial strain. She was able, as she so devoutly wished, to die peacefully at home in March 2007.
I have just referred to the issue of financial strain. Allow me, please, to reiterate that the inexorable progression of ALS necessitates an ever-increasing reliance on medical and technical devices for mobility, for communication, for breathing support, for nutrition, for bathing, and for medically qualified assistance. This especially impacts on those who choose to stay at home for most if not all of their journey. This is the choice made by nearly all of those stricken with ALS. After all, who would want to spend the predicted two to five years in a hospital setting, and there are few if any other options.
In annex A to our submission, there is a breakout of typical costs that can accrue for these supports. Although it varies by province, I must assure you that a large part of these costs are not supported by government programs at any level. In Ontario, as an example, we currently state that about $140,000 is the average financial load directly placed upon a typical family. Therefore, ALS Ontario runs an excellent equipment loan program that we were able to make use of for a lot of Patricia's needs, but we were still out of pocket for almost $80,000, especially including the costs of home adaptations--bathroom and wheelchair access renovations, and for a wheelchair-accessible van. Granted, some tax credit was available at year-end for me, since I had a military superannuation for income, but early into Pat's journey I had given up my role of consultant and the income that this provided. And, of course, because of my self-employed status, employment insurance wasn't available to me, either from the outset or after the provision was introduced for a few weeks of insurance payouts for compassionate care.
Not surprisingly, therefore, I heartily endorse suggestions such as the recent Liberal family care plan calling for a longer period of employment insurance benefits and for the creation of a companion program that is not solely based on employment. This can be crucial to ensuring that families can survive. Since ALS can extend for years, it would be advantageous to allow partial weeks over a longer period rather than blocks of weeks at a time. I call upon all parties to address these issues in their own platforms and proposals addressing the needs of families and caregivers.
Madam Chair, please allow me to segue to a related issue of care and support for veterans suffering from ALS.
Earlier I made mention of providing guidance to a gentleman whose disease progressed quite rapidly. His name was Brian Dyck. As a result of his spirit and commitment, he became the face of ALS throughout the past year in the national capital region.
I was introduced to Brian shortly after his diagnosis about a year ago and I quickly discovered that prior to becoming a police constable he had been a military medic for over ten years, including service in Kuwait during the first Gulf War. Because I had been extensively involved with our contribution to that war, I had been following the developments in the U.S. regarding their recognition that there was a probabilistic connection between military service in that action and the later onset of ALS. In fact the U.S. government in their wisdom had concluded from extensive statistical evidence that even though the cause could not yet be ascertained, military service anywhere increases the chances of developing ALS.
As a result, they had introduced the policy of presumption, which ensures that any serviceman or veteran who develops ALS and their family will be provided with proper benefits and support. Therefore I advised Brian to apply for a veteran's pension on the individual claim track, while concurrently working with the staff of ALS Canada to move on the collective issue of setting in place a policy in Canada similar to that of the U.S.
As you now know, there has been considerable progress here with all current cases of ALS claims within the Veterans Affairs program being smartly moved along. Brian received word of the success of his claim just a week before his death last month, and no doubt was greatly relieved to realize that the support of his wife and his two-year-old daughter was now assured.
This notable progress was made possible by the Prime Minister, the Minister of Veterans Affairs, the staff of Veterans Affairs Canada, including the ombudsman, and by many members of all parties, whose compassionate recognition of the need came to the fore.
You have heard that we seek an increase in the funding of neurological research in Canada--primarily by adding to the overstrained budget of CIHR--not only with an immediate $350 million boost, but also with a multi-year commitment.
Allow me in my final comments to put one new twist on this call. In my opening remarks I implied that I became an active supporter of the ALS Society and related activities because my wife developed the disease. Many can empathize with this view--help research to find hope and a cure for your loved one. And yes, that was there. But I've been around science and technology long enough to recognize that we had only just started down that road, that it would be a long one and would consume some considerable time in arriving even at an understanding of what was going on in a person with ALS, and a longer time to arrive at the doorstep of possible cures.
But I will stick it out for as long as I can, because my wife was one of the seven or eight percent of ALS patients who have an inherited form of the disease through a defective gene passed from her mother, who along with her three siblings developed ALS.
There are now proven, through research, to be several genes that can--perhaps along with some sort of trigger incident--lead to ALS. My children therefore have a 50 percent chance of having that happen, and my grandchildren share that risk. So I selfishly want to see research proceed apace.
Madam Chair, neurological diseases have commonalities. We do our own work, but we also always read about what is happening for other diseases such as Huntingdon's, Parkinson's or Alzheimer's because certain drugs that are effective for some diseases might also be effective in treating ALS. That is why we are not asking for resources specifically for ALS, but for research in general.
Finally, we encourage support for caregivers by increasing the number of weeks of compassionate care benefits under the federal employment insurance program and creating a parallel program to that of compassionate care benefits that is not based on employment.
Thank you for your attention and for allowing me to testify on such a personally important matter.
