Give To Live - Take Toby to Clinical Trials

Meet Coach Toby: One of the most genuine, hardworking, compassionate, and supportive people I have ever met. Coach Toby has given so much of his life’s time and energy in the service of helping others. He is a friend, mentor, and beloved member of our community. He is also a stage 4 cancer patient who is fighting so hard to be here for the many people who love and need him.

Long before Toby developed cancer, he did the responsible thing and purchased an illness and life insurance package because, as a contractor, he didn’t have insurance through his employment. Almost three years into his policy, Toby contacted Manulife to claim the critical illness benefit. As part of this claim, Toby had to give Manulife access to his medical records for the past 10 years. After Manulife received Toby’s records, months and months went by in a process that was supposed to take weeks. As Toby waited, it became clear that Manulife was not intending to pay his claim. After making Toby wait in anguish for six months, Manulife informed him they were denying his claim and terminating his entire policy. They refunded the premiums Toby had paid and washed their hands of him. With his broker’s help and encouragement, Toby submitted an appeal, complete with additional supporting medical documentation. Even though Toby’s medical doctors have all said that his cancer wouldn’t have developed until long after he purchased his insurance policy (and Manulife’s medical reviewers would also know this), Manulife refuses to reinstate Toby’s policy.

The safety net Toby had created for himself has been ripped away. We are opening this Go Fund Me because there are so many promising cancer treatments out there for Toby but because Manulife terminated his insurance, these treatments sit just out of his reach.

Toby has been through so many terrible things throughout his cancer battle, none of which were his fault. Imagine being diagnosed with stage 4 cancer and waiting for almost two months with no oncologist, no plan, and no sense of whether, or even if, there’s a way forward. Imagine having your chemotherapy and radiation cancelled multiple times. Imagine walking around with an excruciatingly painful and potentially life-threatening bowel perforation that went undetected for months until it became an emergency. Imagine waiting for almost 3 hours in a busy ER waiting room holding together a 5-inch-long section of your abdomen after your surgical wound suddenly split open. Imagine looking down and seeing your insides and STILL having to wait almost 3 hours in a waiting room with no pain control.

Imagine that, long before you were going through these horrors, you had purchased life insurance and critical illness insurance. Think of the small bit of relief you’d feel knowing that, if things really started to go sideways, at least you had that insurance policy to catch you. Now imagine being in the desperate place where you must access the critical illness insurance you hoped you’d never need, but instead of paying your claim, your insurance provider spends six months looking for a way to terminate your entire policy.

These are just small windows into what Toby’s life has been like over the past months. But he’s not done fighting. And neither is his family, and neither are we.

When Toby was diagnosed last year with stage 4 cancer, he initially had access to treatments and surgeries that could potentially offer a cure. Not very many people with a stage 4 cancer diagnosis are treated with curative intent, but Toby was. He has done everything that was required of him and more: six months of chemo, a month of radiation, and a major liver resection surgery. The side effects have been miserable and debilitating, but the treatments were successful! Earlier this year, Toby was waiting for his final surgery when he was told that the cancer came back in his liver. Now, the only path to a cure for Toby is to find a treatment that might control the metastatic growth in his liver down to a point where surgery would again be possible. Cancer care in Canada has only three chemotherapy options for Toby’s cancer, and his cancer has progressed on two of those three options. The problem Toby now faces is not that there are no other treatment options, it’s that there are no options in Canada.

If he wants to live, he will have to access treatment in the US.

In consultation with his treatment team, Toby and his wife, Danielle, have been researching options in the US. Danielle has a spreadsheet of no less than 50 clinical trials and is in contact with several major cancer centers and clinical trial sponsors in the states, all of whom are reviewing Toby’s medical files with interest. Even though clinical trial sponsors pay for the treatment interventions, there are many “standard of care” expenses that are billed to the patient, and for Canadians, these fees must be paid upfront before enrolling in a trial.

As an example of the expenses involved, there are two clinical trial options for Toby in at Seattle’s Fred Hutch Cancer Center: One is $97,000 USD and the other is $57,000 USD. Fees are similarly high at other cancer centers in the US.

Although Toby and Danielle are in continued discussions about these fees (and the fees for treatments at other hospitals), there is clearly a significant financial barrier that they cannot overcome by themselves.

Sadly, there has been a lot of tragic death in Toby and Danielle’s immediate family, and they do not have access to financial help from extended family. They are doing this alone. Danielle is Toby’s full-time caregiver, but because she was in post-secondary school when he was diagnosed, she had not worked enough insurable hours to qualify for the caregiver benefit. Neither she nor Toby have any extended health or disability coverage, and now that Manulife has terminated Toby’s policy, his critical illness coverage is gone as well.

Our community raised money through a previous Go Fund Me to support Toby through the anguish and uncertainty of the initial months of his journey. Now that Manulife has shamefully ripped Toby’s insurance policy away from him, he has no way to pay for the clinical trials he is going to need to give him a fighting chance. There are so many new treatments for stage 4 cancer patients like Toby, and new options are becoming available almost every day. It’s beyond distressing that Toby had a plan for this moment but then his insurance company took it away.

People keep telling Toby “Don’t give up!” and he doesn’t want to give up, but he needs more than encouraging words and prayers to give him a chance. Cancer and all the things that go with that have taken so much from Toby. Please help us. Your donation could literally save a life.