The Beginning of the Eric Drew Foundation
The urgent need for independent patient advocacy was first realized by Eric Drew during his initial inpatient leukemia treatment at Stanford Medical Center in early December 2002. He had just been diagnosed a few days earlier with one of the most aggressive cancers known to man, ALL (Acute Lymphoblastic Leukemia basically a cancer of the immune system). He was given less than a week to live without immediate and extremely invasive chemotherapy treatments that in themselves could be fatal.
There was no time to evaluate the options or get second opinions from different hospitals. His life was hanging by a thread, and he was totally dependent and completely at the mercy of people he had never met, and on a system he had no knowledge of. He had a million unanswered questions, but the and the hospital staff were usually so busy with triage trying to keep patients alive and coordinate the hundreds of medications they disperse per hour, that they referred most questions to the doctors who were even busier than the staff.
One problem was that there were so many doctors rotating through, it seemed like every time the door opened it was a new face, especially at a teaching hospital like Stanford. It was impossible to establish a rapport and get comfortable. It could be days before he saw his primary doctor if he even had one, so who could help and where could he go to get so many questions answered? Where could he go to talk with others who were also fighting the same fight or had been through this and survived, somehow dodging all the bullets along the way? Where could he get unbiased opinions about treatment strategy and options, which medications to request and which ones to avoid, and what hospitals might give him the best chances of survival?
The answer was nowhere! He didn’t realize this at the time, but the doctors he spoke to would only discuss treatments that they could offer at that time, so this was only a very small glimpse into the universe of treatments options he actually had. It became immediately obvious that he was essentially alone and that there was nobody to call on outside of hospital staff to get unbiased information, soothe his fears, and help him navigate the hundreds of life and death decisions that were ultimately his.
After a Code Blue near death incident from a reaction to toxic medication almost ended his life just a few days into his treatment, Eric woke up in the ICU and at that point vowed to dedicate his life to helping patients like himself navigate complex medical decisions and avoid the pitfalls.
In early 2003 the Adult ALL PH+ Support Fund was created to assist patients fighting adult onset ALL who were Philadelphia Chromosome positive like Eric was, making the leukemia much harder to treat. Eric was amazed that so many people were suffering with leukemia and other diseases that could be cured with a bone marrow transplant, but could not find a bone marrow match for the transplant mainly because at that time most Americans were not registered in the international database.
As part of his mission Eruc set out to change this! As sick as he was, he set up a table on the busy sidewalk on Main Street in his hometown of Los Gatos, California, and handed out information about leukemia and the urgent need for people to sign up as potential marrow donors. The Silicon Valley Community as well as local media responded to his pleas and soon he had over 100 volunteers and many organizations such as the Red Cross, Rotary International, Lions, Kiwanis, and the National Marrow Donor Program coordinating a massive marrow sign up drive. With Save our Eric as the war cry they raised almost $250,000 in about 6 weeks and put on one of the largest bone marrow registration drives ever! Save Our Eric website was created and “Save Our Eric” banners were put up all around the Silicon Valley. Over a thousand people came to be registered, and several hundred others participated in the fund raising parties and auctions around the event.
Although the charter of the foundation was specific to Eric’s disease, patients suffering with all types of serious and terminal illnesses came to Eric for help, even as he was fighting for his own life in various hospitals around the US. From his hospital bed and regardless of how he felt, Eric never turned down a plea for help and was able to save many patients by helping them find and get the treatments they needed.
After almost 2 years of extensive treatment and multiple failed transplants, Eric was essentially sent home and offered hospice care. Without any full siblings or a suitable bone marrow match, there was nothing else that US hospitals could offer him. He refused to accept that nothing could be done and was even diagnosed with a Mental Adjustment Disorder because he would not accept his terminal diagnosis. He consulted with every major cancer and transplant center in the US, but unfortunately the answer was always the same, there is nothing that can be done.
When Eric was certain that all the options in the US were exhausted, he networked with top doctors and research scientists Europe and Asia and contacted the big pharma companies in Basil Switzerland and talked with their leukemia specialists. Through this networking he discovered a new drug that had been developed in Europe but was not yet available in the US, and demanded these drugs which would slow down his disease and give him more time.
This new class of drugs called Kinase Inhibitors essentially stopped slower moving leukemia’s and was a major breakthrough in medical science. He followed this trail of research and finally after hundreds of contacts and endless research, a breakthrough appeared! A Swiss doctor that was transferring to the US to launch a new transplant technology met with Eric in Portland Oregon and told him about a new breakthrough developed in Europe using stem cells form the umbilical cords of newborn babies.
With the needle in the haystack found, Eric located upcoming clinical trials at 2 hospitals in the US, Duke University and University of Minnesota medical centers. Minnesota was the first to launch the trial so Eric flew back and met with the head of the Adult Transplant Unit at Minnesota. He was informed that this treatment would likely kill him as he had already been through so much and his body was quite weak, but if he somehow lived through the procedure he may have a chance at a long term life afterwards.
The international search located a match from a baby girl in a small stem cell bank in a basement of a Milan Italy medical center that had been frozen for 8 years. It was a long shot, but dying slowly and painfully over the next few months was simply not an option, so he packed his things and drove to Minneapolis. On July 23 of 2004, Eric became one of the first adults in the world to receive a transplant using stem cells from multiple umbilical cords.
After Eric miraculously survived his terminal leukemia, he became an international spokesperson for umbilical cord stem cells. His story was featured in almost every major news publication is the US and Europe. He was interviewed on by every major national TV new channel and was invited to speak on such shows as CNN morning show, NBC News, Fox News, Montel, Geraldo, Donny Deutsche, and many others. He went on two years of speaking tours at hospitals and medical centers around the US educating people about umbilical cord stem cells and the need for patient advocacy.
The Adult ALL Support Fund was changed to The Eric Drew Foundation and the mission was changed to reflect the new objective of promoting advocacy for all medical patients regardless of their disease. As Eric often states, not about the disease its about the patient.
As a result of the media and the tens of thousands who have heard him lecture, hundreds of people called on Eric to help them or their loved ones with whatever disease they were dealing with, and Eric became and expert at researching advanced treatments and evaluating medical professionals, facilities, new medications and treatments, and finding the most appropriate clinical trials. He has saved and extended so many lives that it is impossible to count, and he has given hundreds of patients around the world hope that they too will be able to overcome or manage their illness and move on to enjoy fulfilling lives. Teaching patients to be accountable for their own treatment, his message is one of hope and empowerment!
Now the time has come to bring Eric’s extensive knowledge and strategic research techniques to the masses through the launch of WeHeal.org. By making this strategic information available to all, we are not limited to helping patients and families one at a time.
In addition to making this information available online, WeHeal will provide hundreds of disease specific communities where patients and advocates can support each other and share critical information on new breakthrough technologies. Eric did not survive his disease on his own. It was his extensive network of patients and professional contacts around the world that led to finding the treatment that eventually cured him, and now with We Heal communities, everyone will have immediate access to such a network.
“Alone, we parish, but TOGETHER WE HEAL!” – Eric Drew