EndBrainCancer Now Initiative Works to Support, Educate and Expand Survivorship for Patients

Aug. 27, 2000, started as an ordinary day for Dellann Elliott Mydland. She and her husband Chris Elliott and their two children, then 5 and 8 years old, had just finished up a weekend at their cabin and were preparing to relax by the grill at home. But when Dellann returned from buying propane and supplies for hamburgers she was surprised to find her husband sitting outside with their children looking distraught and clutching the phone in his hand. Her husband said he was feeling “weird” and nauseous and smelling strange scents that were not there. Within 15 minutes his symptoms intensified and they called 911. On the way to the hospital he experienced a grand mal seizure and by the next morning his diagnosis was clear: He had brain cancer.

Within three days he had his first surgery, which was followed by three additional surgeries and numerous rounds of chemotherapy over the next two years. At times throughout his cancer journey, life almost seemed normal; the couple took a trip to Hawaii, played golf and spent time their children. But the cancer kept returning and by Elliott’s fourth scheduled surgery, a new inoperable brain tumor was discovered in his brainstem. The couple knew his journey would soon come to an end.

Despite this difficult reality, the two had others in mind. With the help of Elliott’s doctor, Elizabeth Maher, MD, PhD, from the Dana-Farber Cancer Institute, they decided to create a foundation that would make it easier for other patients, families and caregivers to fight and cope with brain cancer. They didn’t want anyone to experience the many challenges they had faced finding the right treatments, doctors and support.

They created such a foundation on May 18, 2002, which today is known as the Chris Elliott Fund/EndBrainCancer Initiative. Elliott died less than a month later on June 13, 2002.

Today the Chris Elliott Fund/EndBrainCancer Initiative has helped thousands of patients and caregivers nationwide. They provide patients immediate access to advanced treatment options and top specialists, work as a matchmaker between clinical trials and patient candidates, advocate on issues of national public health policy, educate the general public on matters related to brain tumor and brain cancer prior to diagnosis, and much more.

They have been expanding rapidly and hope to soon provide support for 4,800 patients/families annually. CURE spoke to Dellann to learn about how the Chris Elliott Fund/EndBrainCancer Initiative is working to change the face of brain cancer treatment and support.

CURE: What are the main goals of your organization?

I am proud to say we’ve done some amazing work. We used to fund research with cash. We funded key research that proved at that time that glioblastoma is really not one disease, but several diseases. That is a good thing because that really reinforces that this is a personalized disease and not everyone can be treated with standard protocol. Brain cancer is at least 16 subclasses of disease. We also funded part of the research that prioritized the genes that cause glioblastoma. That research went into creating the Cancer Genome Project, with glioblastoma as the first disease to be profiled. That was very exciting.

In 2008, we decided to go in another direction. There is an issue within the disease of patients not getting into clinical trials until basically it is a desperate move and they probably aren’t going to survive. We wanted to determine what we could do to change that cycle and advance research at the same time. We started listening to patients’ stories and educating them about what they could do differently and what clinical trials they could be candidates for. We started taking emails and calls. It started with 20 per month, and then it grew to 40 per month. That grew to 100 and then 200 per month. We’ve been told by the organizations running trials that our work helps them get patients that are great candidates for clinical trials, which improves outcomes, cuts costs and expedites the trial process. In that way we are creating more survivors and I am very proud of that.

It really is about extending that hand and saying ‘we will help you.’ Our medical system is moving to a less human approach, and with brain cancer being such a personal disease, as it literally changes the person and the patient, we have found that people just want to talk and listen. I have a unique situation having gone through this with my husband and being willing to just talk to as many people as possible about my experience. We don’t just send people to a website and call that patient support. We offer them a personalized approach. We create educational pieces and videos, organize speakers at events and really reach out to patients and caregivers one-on-one. We have a patient support service and call center with six staff members. We receive over 7,000 inquiries worldwide every single month and we are only able to respond to a very small portion of that. We are working on getting more staff to manage this. The need is just going to increase.

What services do you offer patients with brain cancer and their caregivers?

Our main goal is help get these people immediate access to clinical trials. We do an assessment on the patient to try and figure out which trials are in their area that they are a candidate for. If there are not any in their area, we determine if and how they could travel to those trials. We also make appointments for patients across the nation with top brain tumor specialists directly. We have great relationships with many specialists. If the patient gives us permission, we will move their medical records for them. Those services are provided every day by our organization for free. The other piece that we do for every single person that contacts us directly is create a personalized patient packet that we send in the mail. It is a booklet of information fact sheets that we’ve created that are on target to what that patient needs. We add any additional information they request. Through email we send them additional information.

We also help patients create a plan in case their tumor does reoccur. They can reach out now and makes plans for what to do if this happens because it does take a while to get these things going. It takes time to get through the system because our brain tumor doctors and specialists are all so busy. There are weeks and weeks of waiting to get on a wait list to come in and see them. However, because we have been working with these doctors for so long we can get sometimes patients in within 24 to 48 hours. We are not doing anything earth-shattering, it is just old-fashioned patient support.

How do you fund your operation?

It is very difficult to get funding for patient support as opposed to research, even though we know our efforts directly support research by providing patients for clinical trials. We are very focused on caring for the patients and getting them the right treatments, but the benefits to research are enormous. However, we have been so focused on the cause for many years that we haven’t focused as much on the fundraising element. We are working to change that so we can meet demand. We are kicking off a three-year $3.5-million plan. A large portion of that money will go to hiring staff to help us manage inquires that come in. Right now we have fewer than 12 people, but we’ve built the model and we know what works — it just needs to be scaled up. We are looking for funding partners to help power our day-to-day work, help patients and caregivers, and advance research. I hope that companies, individuals and researchers will step forward and offer to help us bring in that funding.

Based on your experiences, what advice would you offer to newly diagnosed patients with brain cancer?

Educate yourself and explore your options before taking any steps. Very rarely is there an emergency situation where you have to have surgery right then and there. But what is often the case, as it was with my husband, is that they schedule the surgery for a few days after your diagnosis. So you literally go from being told you have a brain tumor to having surgery three days later. That leaves very little time for you to get a second, third or fourth opinion. You don’t have time to create a treatment plan. What that often does, unfortunately, is take away the option of having your brain tumor tissue profiled, via DNA sequencing or genomic profiling. When they do surgery that fast, they usually just throw away the tissue. They leave enough for the pathology report, but that is it. It really is important to get that information out of the tumor because that provides clues on how to treat it. They can use this to determine what drugs it may respond to and if standard protocol will have an effect or not. Standard protocol is resection, standard radiation and a drug called Temodar (temozolomide). This drug only has a response rate of 30 percent. That means that most people that receive standard protocol for brain cancer are receiving a drug that is not going to work for them at all. That is why it is important to have the knowledge ahead of time to ask for DNA sequencing and genomic profiling. You should be at a brain cancer center working with a brain tumor specialist and neurooncologist. Those things really make a difference in quality of life and survivorship.

How is your organization working to change this?

Sadly, what happens often is that someone calls us for help and we find out that they did not know about DNA sequencing, genomic testing or a second opinion and they’ve already had their surgery. All we can do at that point is educate them going forward. When they have a recurrence they become a candidate again for these tests. If we could change that — if we could get the world to know ahead of time that if a brain tumor happens in their family or friend they have to demand DNA sequencing and genomic testing of that brain tumor tissue upfront — that would change everything. If you are at a place where it is not offered, we need to somehow figure out how to empower patients and families and caregivers to go someplace else. If people contact us, we can help them do that. We need to educate on mass level. If we could do that, we literally could change how the disease is treated and create survivors. Then pharmaceutical and biotech companies will see these survivors and start making investments in this disease. This is something we are working toward every day.

To learn more about the Chris Elliott Fund/EndBrainCancer Initiative visit http://chriselliottfund.org/