On behalf of cancer patients and their families, we thank the committee for giving us this opportunity to speak about problems in access to special benefits and to highlight the improvements Bill C-44 will bring.

The Canadian Cancer Society is a national, community-based organization of volunteers whose mission is to eradicate cancer and enhance the quality of life of people with cancer. For a few years, the society has been calling for special benefits for parents of children with cancer. We want those benefits to reflect the reality the parents face. Currently, the only benefits parents have the right to are six weeks of compassionate care benefits, if a physician certifies the death of their child in the next six months.

I want to begin by talking to you briefly about childhood cancer. It is estimated that, in 2012, 1,400 children will be diagnosed with cancer and 160 will die from the disease. Although the five-year survival rate, for several types of childhood cancer, is 82%, cancer remains the second leading cause of death in children over one month of age, after accidents.

We are recommending that the committee ensure the flexibility of the new benefit program for parents, and here is why. The progression and the treatment of the disease vary depending on the cancer type and the child. Although each patient is different, chemotherapy treatment, for a child, takes about six months, but it can range from three to twelve months.

When radiation therapy is used as the main cancer treatment, it is usually administered once a day, five days a week, over three to eight weeks. Treatment may also be longer, and hospitalization periods may be more frequent or longer—or both—and not always ongoing. In addition, specialized pediatric oncology treatment is available only in certain Canadian cities, so many parents have to travel more than 100 km to have access to the required medical care for their child.

Taking care of one's child after a cancer diagnosis is not optional. It is critical for parents to participate 24/7 in the care of their child.

Cancer in children and youth creates a disproportionate impact on health and social services systems, as well as on the economy. Having a child with cancer is a difficult experience whose significant repercussions go beyond treatment. An estimated two-thirds of childhood cancer survivors have at least one chronic or late-occurring effect from their cancer therapy, and up to one-third of these late effects are considered major, serious or life-threatening.

One of the important things for this committee to keep in mind is that, in the case of cancer, more children are treated over a longer period of time, but not always on an ongoing basis. Cancer treatment is episodic. Pediatricians strongly encourage that children resume a normal life as soon as they feel better.

For that reason, we recommend the committee ensure that the program is flexible, so that parents can take time off from work when necessary, and resume a normal life when their child does. The idea is to recognize the non-continuity of treatments and the flexibility regarding benefit renewal in the event of a relapse or late side effects.

I will now briefly talk to you about combined benefits. Ms. Kittmer will be able to explain that better by sharing her personal story.

The combining of benefits is an important improvement that will stem from Bill C-44. It will allow an individual receiving parental benefits to claim sickness benefits in case of illness. Cancer cases during or following a pregnancy are not very common. The type of cancer most often related to pregnancy is breast cancer. We don't know exactly how many women in Canada are affected, as that data is not collected. However, in the United States, 227,000 breast cancer cases are diagnosed annually, 7,000 of which are supposedly related to pregnancy.

Like Ms. Kittmer, many women told us about how difficult it was for them to access sickness benefits. They were going through the best time of their life and their worst nightmare at the same time. They are very happy about this improvement.

Unfortunately, given the surgery, chemotherapy treatments and radiation treatments involved, the 15 weeks of sickness benefits expire before the end of treatment. We are recommending that the committee ensure the program's flexibility when it comes to combined benefits, so that it will be easier for parents to go from sickness benefits to parental leave during the treatment, or vice versa, and so have the time to recover without losing any quality time with their child.

The job protection component of this legislation will help many Canadian families. As a number of people have mentioned, this will unfortunately not apply to many jobs that come under provincial and territorial legislation. That is why the Canadian Cancer Society is urging the committee to ask the federal government—at the next meeting of the relevant federal, provincial and territorial ministers—for a clear commitment to discussing the need to amend provincial and territorial legislation in order to provide the same job protection to all Canadians.

Last February, the Minister of Finance said that the new family caregivers tax credit is a first step. We see this bill as another important step. We will work with the members of this committee and all the governments on moving this issue forward. The Canadian Cancer Society feels that the next key step is to enhance sickness benefits.

Thank you.

Ms. Kittmer will now share her story.

9:15 a.m.

NDP

The Vice-Chair NDP Chris Charlton

Thank you very much.

Ms. Kittmer.

9:15 a.m.

Jane Kittmer As an Individual

Good morning.

I am pleased to be here today to tell you my story. I hope it encourages you to pass Bill C-44 and make some much needed changes to the EI Act.

I gave birth to my second son, Nolan, on March 9, 2010. I had a very uncomfortable pregnancy, as I felt very ill and tired, but doctors assured me this was normal for a second pregnancy. In my 36th week of pregnancy it was determined that the baby's growth had slowed or stopped and they decided to induce me early.

Within an hour of giving birth to my healthy baby, the doctors detected a mass in my abdomen. After an MRI it was determined that I had a large tumour that was suspected, and later confirmed, to be from my adrenal gland. I had surgery seven weeks later and the tumour was successfully removed, along with my right kidney and gall bladder. It appeared the tumour hadn't spread. It was confirmed that this tumour was adrenal cortical carcinoma, that is, cancer of the cortex of the adrenal gland. That is a very rare and very aggressive form of cancer.

Although it was hoped that all the cancer had been removed, it was suggested that I take daily chemotherapy, ideally for five years. I started taking daily chemotherapy—it was a drug called mitotane—on July 1, 2010, and I took it until July 26, 2011, when I stopped because the side effects of the drug were greatly affecting and greatly reducing my quality of life. This chemotherapy drug builds up and stores in the fatty tissue of the body, so the side effects have remained, but they're thankfully wearing off as time passes.

During the 16 months when I gave birth, had surgery, and took chemotherapy, I wasn't able to look after myself, my children, and my home without a great deal of help from my husband, my family, and hired help. Two and a half years have passed since this all began and I have still not returned to work because of the lingering side effects of the chemotherapy.

I don't usually tell this story to this many people.

I started dealing with Service Canada before my surgery in 2010 and I am still dealing with them. I assumed it would be an easy conversion from maternity benefits to sick benefits, but I was shocked when I was told from the beginning that I wouldn't get sick benefits. I have spent many hours talking to people about this. I appealed the denial of the sick benefits to the board of referees—and I have done this all while I was sick.

In my case, I did not fall ill after the start of my maternity leave. I was very ill prior to giving birth and prior to the start of my maternity leave. My condition was finally diagnosed immediately after giving birth and after the start of my maternity leave.

My fight for additional benefits was more about the time I lost with my sons than the financial penalty of not getting sick benefits.

An additional 15 weeks of benefits would have been a welcome improvement; however, it wouldn't have seen me through the chemotherapy. To say this was a difficult, stressful, and devastating period is a gross understatement. I don't think that anyone should have to fight for sick benefits when they need it the most.

Changing the legislation to allow stacking EI benefits would be extremely beneficial for those who are sick when on special benefits. It would give a person additional time to hopefully improve, health-wise, so they don't have to return to work sick, or give them more time to make major life decisions.

l'm sure there are more mothers who are facing the same situation, and many of those need the financial benefit and recovery time of sick benefits. I am very happy to see there are proposed changes to the existing system.

Thank you.

9:20 a.m.

NDP

The Vice-Chair NDP Chris Charlton

Thank you very much, Ms. Kittmer. Thank you very much for your very powerful personal story and your courage to share it with us today. We very much appreciate that.

Go ahead, Ms. Davis.

9:20 a.m.

Marie Adèle Davis Executive Director, Canadian Paediatric Society

Thank you for inviting the Canadian Paediatric Society to present to you today.

I'm Marie Adèle Davis, the executive director. I'm pleased to address you on behalf of more than 3,000 pediatric specialists and subspecialists who are our members from across Canada.

CPS members represent the physicians who are caring for the children, youth, and their families who will benefit from the changes proposed in Bill C-44. We applaud the Canadian government for understanding the particular challenges faced by parents of gravely ill children, the need for them to be at the child's bedside in the hospital, their ability to stay home and care for their recently discharged child, and the necessity for parents to be available to make health care decisions on behalf of their child throughout the illness. Further, the proposed legislation recognizes the emotional stress of having a child afflicted by cancer, severely injured in a life-threatening situation, or at the end stage of an incurable genetic disorder.

Like the Canadian Cancer Society, CPS also supports that flexibility be built into the legislation, that it recognize that the parents of a gravely ill child may not be taking all the leave at any one time in a given 52-week period. Given the resilience of kids, even those facing a life-threatening illness, they may be able to return to normal life for periods of time, attending school and other activities. The fact that Bill C-44 would allow parents to re-apply for the benefit, should the child have a serious relapse, is also practical. We also fully support that the benefit can be shared between parents, ensuring that both can be fully involved in the care of their gravely ill child.

The Canadian Pediatric Society can work with the Canadian government to ensure the smooth implementation of Bill C-44.

Since our members make up the majority of physicians who will fill out forms for families, we would like to help design the forms, to ensure their ease of use. The forms must be created by taking child and youth health into consideration, and not just by modifying forms designed for adults' health care needs. We think that, if a family-oriented form is designed, the benefit application process will be much smoother and red tape will be reduced.

It's important to remember that physicians caring for gravely ill children are extremely busy. We want to make sure that they devote their time to families rather than to paperwork and the appeal process.

CPS would also welcome the opportunity to refine the definition of gravely ill, to make it as workable as possible for family pediatricians and the federal employees managing the program. Under the compassionate care benefit, the definition criterion was that death was expected within six months. This is very hard for pediatric specialists to predict. Children are amazingly resilient and can beat seemingly insurmountable odds at various times during a critical illness. So it is very difficult to predict death with any certainty.

Further, the whole practice of pediatrics is based on hope for the future. Pediatricians work hand in hand with the family to ensure that kids have the best possible chance at life. To deliver a diagnosis of certain death within six months is just not something a pediatric specialist can do or will do, as it takes away from the hope that is critical to working towards a positive outcome.

In closing, the Canadian Paediatric Society is very supportive of the changes proposed in Bill C-44. We do encourage the government to work closely with us to ensure the smooth implementation of the bill and to realize all its potential to support the parents of gravely ill children and youth.

Thank you.

9:25 a.m.

NDP

The Vice-Chair NDP Chris Charlton

Thank you very much.

We'll now move to our round of questioning, and just so members are aware, we'll do our regular round of questions, but we'll abbreviate the spots to three minutes each so that everybody can have a turn.

We'll start with Madame Boutin-Sweet.

9:25 a.m.

NDP

Marjolaine Boutin-Sweet NDP Hochelaga, QC

Thank you, Madam Chair.

Ms. Page and Ms. Davis, you talked about flexibility and about the amount of time treatments take.

The bill allows parents with gravely ill children to take unpaid leave for 37 weeks out of 52. However, I got the clear impression that the treatments—be they for cancer or other diseases—usually take more time.

Could you clarify how much time a parent needs to take care of their child?

9:25 a.m.

Senior Health Policy Analyst, Canadian Cancer Society

Denise Page

The required amount of time will vary depending on the child and their age. Currently, parents have nothing. Often, they have to leave their job, and that's why this flexibility is necessary. If the 35 weeks of leave are taken as needed, at least a year should be covered. That's why we are asking for flexibility. A child may receive chemotherapy treatments for six or eight weeks, feel better, resume a normal life, and then have a relapse six months later.

Program flexibility would enable parents to either submit a new application, or have a new 35-week leave period for the same child and the same disease.

9:30 a.m.

NDP

Marjolaine Boutin-Sweet NDP Hochelaga, QC

Unless I am mistaken, we would be talking about 35 paid weeks, but 37 weeks altogether.

9:30 a.m.

Senior Health Policy Analyst, Canadian Cancer Society

Denise Page

Yes.

9:30 a.m.

NDP

Marjolaine Boutin-Sweet NDP Hochelaga, QC

What do you think about that, Ms. Davis?

9:30 a.m.

Executive Director, Canadian Paediatric Society

Marie Adèle Davis

I agree with Denise. It's a great change from what's available now, and it's a good start. I think it will be very important to monitor the program to see for how long parents are accessing it and how many parents may not receive support for the full length of their child's illness. The great thing about kids is they are very resilient, and even those who are gravely ill can actually return to good health.

So for a new program, we feel that 37 weeks is a good start, and we'll be monitoring it to make sure that it does support the parents in the way that our pediatricians know they need to be supported.

9:30 a.m.

NDP

Marjolaine Boutin-Sweet NDP Hochelaga, QC

While we are on the topic and we can propose amendments, do you have any specific recommendations regarding flexibility, regarding time periods or forms? Do you have any recommendations we could take into consideration now in order to improve the bill?

9:30 a.m.

Senior Health Policy Analyst, Canadian Cancer Society

Denise Page

As far as flexibility goes, it should be easy for the parent to stop working. Once they receive the diagnosis, parents don't have six months to prepare; they have to be ready right away. So it should be easy to fill out the form and have access to benefits.

Parents should be able to return to work as soon as the child is doing better. As Ms. Davis was saying, that may happen quickly. At times, we may think that only one or two weeks are needed, but 48 hours later, the child seems to be cured and returns home, beginning a period of remission. In such cases, for the good of the family, the parent should be able to resume a normal life, but still have access to a flexible program that can be used in case of another relapse.

9:30 a.m.

NDP

Marjolaine Boutin-Sweet NDP Hochelaga, QC

So the process should be flexible, simple and quick.

9:30 a.m.

NDP

The Vice-Chair NDP Chris Charlton

Thank you very much. We'll move on to the next question.

Go ahead, Mr. Daniel.

9:30 a.m.

Conservative

Joe Daniel Conservative Don Valley East, ON

Thank you, Madam Chair.

Thank you, witnesses, for your testimony. I really appreciate that.

It's obviously not an easy situation, particularly for families to deal with, and I'm really looking to see if I can get some feedback from you. In your view, to what degree do families benefit from the legislation, and do you feel that this strikes at least an adequate balance? Anybody can answer.

9:30 a.m.

Executive Director, Canadian Paediatric Society

Marie Adèle Davis

Certainly from speaking to our members—and I'm sorry I don't have one here today. It's a very busy time for pediatricians because there are lots of respiratory illnesses going around and pediatricians don't like to take office time away, as important as they feel this is. They deal with these families every day and they see the struggles they face.

As Madame Page pointed out, for many of these illnesses, the family is dealing not only with a sick child, but they actually have to leave their home community to receive the tertiary care in a pediatric health care centre and they may have no income support. The pediatricians see families who make a very difficult decision to split up for the time their child is being cared for. Say it's somebody from Cape Breton. The mom and dad will go down to the IWK in Halifax and somebody else will stay home with the other children.

As I said, this is a great change, and I think it will be important to monitor it to make sure that it does meet the needs and to look for that flexibility. The other thing for me that would be very important is that the actual application process be as simplified as possible.

Some parents may work and then be off for two weeks, work for a month and be off for a month. You don't want a complicated and elongated process every time they need to reapply for it.

9:30 a.m.

Conservative

Joe Daniel Conservative Don Valley East, ON

Ms. Kittmer, from your experience, does this bill start to address some of the issues that you've faced?

9:30 a.m.

As an Individual

Jane Kittmer

Yes, it certainly starts to address it. Flexibility is a really good idea. In my case, I had surgery. It took eight weeks to recover from that. Then I felt pretty good. Then I started chemotherapy, and I didn't feel the side effects from that for about a month and a half. Once I started to feel the side effects of the chemotherapy, I felt that every day for eight months.

So the flexibility is really good. It's great that the sick time would be stacked on top of the EI. Maybe 15 weeks is a good start; I think 15 weeks is a little short—a lot short.

9:35 a.m.

NDP

The Vice-Chair NDP Chris Charlton

Thank you very much, Ms. Kittmer, and thank you, Mr. Daniel.

Madame Day.

9:35 a.m.

NDP

Anne-Marie Day NDP Charlesbourg—Haute-Saint-Charles, QC

Good morning. Thank you for joining us.

One of my constituents has a 20-month-old daughter with scoliosis. So she regularly has to spend from six to eight weeks at the hospital, where her baby's rib cage is manipulated. That treatment will be repeated until the child reaches adulthood.

Do you think the legislation before us is sufficient to cover that person's care without her being penalized? That woman has a PhD. She was supposed to enter the labour market and did not think something like this would happen.

I would like to know what you think about these kinds of illnesses that require frequent care?