September 2012

Just like millions around the world and perhaps many of you, I am a patient. I was diagnosed with multiple sclerosis over 30 years ago. At that time, I was told there would be a cure in 30 years. If I were diagnosed today, I would be told the same thing.

My frustration due to the lack of a cure for multiple sclerosis has led me to investigate the incredible challenges facing the drug development process for all diseases. Very few diseases have effective treatments or cures, and no neurological disease has a cure, to date.

You may be as surprised, as I was, when I uncovered these statistics associated with the medical research world, one that results in very few new drugs for patients year after year:
• Over $139 BILLION U.S. dollars are invested annually in medical research
• And over 800,000 peer-reviewed scientific papers are published each year
• The result = Only 30 new drugs were approved by the FDA for all diseases in 2011

Having investigated the incredibly expensive yet inefficient process of new treatments reaching patients, I have made it my mission to bring patient-focused medical research to the forefront. Utilizing my business background as a consultant and a startup entrepreneur in the Silicon Valley, I established the Myelin Repair Foundation (MRF) with no healthcare or science background. Using the goal-oriented approach from the business world, we are defining a new collaborative research model that connects and coordinates academic scientists, biopharmaceutical companies and all of the other participants within the therapeutics development continuum. Our goal: To accelerate clinically-relevant science into a new myelin repair drug for multiple sclerosis by 2019.

My hope is that we will not only accelerate the development of a myelin repair drug for MS, but the Myelin Repair Foundation’s new collaborative research model will be widely adopted to accelerate new treatments for all diseases. By bringing effective treatments to patients safely and quickly, this new approach significantly impacts the future of healthcare by minimizing patient suffering, disability and high healthcare costs.

The barriers within the current, multi-step scientific research process can seem overwhelming, but these are challenges, I learned, that are not impossible to overcome. At the Myelin Repair Foundation, we hope to improve the lives of patients who face a bleak future of waiting endlessly for effective medicines or cure for disease. We envision a new future for patients, one filled with hope and good health.

It looks like our O+, O-, A+, and A- RBCs are going out to our hospitals at blinding speeds these days. When many of these blood types are at or near the critical levels in our inventory, everyone's work here at SBC is cut out for them. Finding and scheduling donors, setting up mobile blood drives, drawing the blood, testing it in the lab, and processing it for transfusion has our little hands working as fast as they can go.

I woke up one Tuesday and knew it was going to be a crappy day. I asked my daughter to get herself ready for school and wake me when it was time for me to drive her there. I e-mailed my personal trainer and cancelled my first appointment to launch a workout routine. Even showering felt like too much effort.

I dragged myself through the day with a general sense of exhaustion, but I hesitated when I was about to cancel my evening plans to attend an advance screening of a new documentary with a friend. I had already cancelled attending her birthday party the week before, so I decided to pull myself together and fake my way through our date. And boy, am I glad I did.

“I Am” is the latest film project of director Tom Shadyac, whose credits include directing Ace Ventura, Bruce Almighty, and Liar Liar. Being a big fan of the “stupid humor” genre of movies, I was curious about the more serious, thought-provoking side of Tom. After a cycling accident left him struggling with both physical and emotional recovery, Tom began to question the value of the many outer trappings of his Hollywood success: the homes, the private jets, all that pricey “stuff.” Was it really what made him happy? Or was he, as he suspected, part of the cancer that infected society?

Tom rid himself of most of his possessions – including his 17,000 sq. ft. Beverly Hills mansion – and moved into a simple neighborhood comprised mostly of trailer homes. Riding his bike to work each day, he launched his latest (and self-funded) project. Setting out with a small film crew, Tom asked an array of significant thinkers two questions: What’s wrong with the world? And what can be done to make things better?

Instead of receiving confirmation about the competitive “dog-eat-dog” nature of life, Tom discovered what was right with it: that we’re genetically predisposed to connect with one another, to feel and display empathy, to cooperate, to be our brother’s keeper. As one scientist he interviewed put it, we are “hard-wired to respond” with compassion when we see someone in need. Another said, “What we do at the individual level really does impact at the global level.”

I couldn’t help but think about blood and organ donors, most of whom have no personal ties to the people whose lives they’re saving. Just like the proverbial butterfly flapping its wings, the blood donor rolls up her sleeve and sends a profound ripple effect into the lives of the patient and his loved ones. Who’s to say what good blood and organ recipients will create in the world once given that second chance? As Tom concludes, love is a force. And being a blood or organ donor is one of the most profound displays of love possible.

Following the movie screening was a question-and-answer session with Tom, during which his irreverence, joy, empathy, and pure humanity poured forth. I didn’t want to put Tom on the spot with my question, so I waited until most of the auditorium had cleared out to approach him, though I already sensed the answer to my question. Not only are he and his movie promoter, Harold, regular blood donors, but Harold also donated a kidney to a complete stranger – an Ethiopian immigrant with whom he continues to stay in touch. Why am I not surprised?

Stanford Blood Center founder and Medical Director Ed Engleman, MD, took a break from the lab to share his inspiring story with a group of students from the Tech Trek science and math camp on July 16.

A professor of pathology and a cellular immunologist (someone who studies the cells of the lymphoid organs, which are the main agents of immune reactions), Engleman described the thrust of his research and the unique role of Stanford Blood Center. More than a blood bank, Stanford Blood Center hosts a sophisticated research lab on the frontlines of fighting the most serious diseases affecting us today, such as HIV and cancer—all made possible because of the selflessness of blood donors.

Engleman highlighted the exciting research underway in the lab the students toured, telling them, “Research is a treasure hunt; it is like solving a mystery. Each problem we solve in the lab has the potential to cure a disease.”

The talented and inquisitive students, who will enter the eighth grade in the fall, were treated to Engleman’s description of his efforts to use white blood cells to fight cancer, and his work to improve our understanding of HIV/AIDS. Through Engleman’s research on HIV, Stanford Blood Center became the first blood center to screen for AIDS-contaminated blood. The students were eager to learn more about this effort, and Engleman delved into cellular immunology with them, explaining how the HIV virus wipes out immune systems by attacking the smart CD4 cells, which serve as advisors to T-cells—essentially disabling the brain of the immune system.

Engleman’s efforts to encourage the Tech Trek students embody one of the core tenets of Stanford Blood Center’s mission: to provide hope for the future by teaching tomorrow’s leaders in transfusion medicine. Engleman commented, “China now surpasses the US in patents and biomedical research. Reaching students when they are young, and sharing the fascinating world of research involving science and blood, is of the utmost importance if we are to inspire the next generation of medical researchers in this country.” He added that the Tech Trek students showed impressive curiosity and grasp of scientific principles for students who are not even old enough to donate blood yet.

Tech Trek, sponsored by the American Association of University Women, is a science and math camp designed to develop interest, excitement, and self-confidence in young women. It features hands-on activities in math, science, and related fields.

If you are one of our dedicated platelet pheresis donors, you know that we keep careful records of how much you donate— and how often—in the familiar Annual Donor Records tucked in your chart. It is our responsibility to ensure that your donation frequency is safe for you. Before each of your donations, we tally all of your visits, red blood cell losses and plasma losses for the 12 months prior to that donation, to be sure that you will not exceed any of the safety limits.

Recently, the FDA standardized its method of calculating the maximum allowable red cell donation limit. By October 1, 2012, we will be lowering the allowable red blood cell loss from 1,620 to 1,430 mL in accordance with FDA’s new standardized formula. Plasma limits have not changed.

With each platelet donation, you lose a small amount of red blood cells in the plastic tubing of the pheresis circuit and in the tubes used for testing the donation. The red cell loss with each platelet donation (46 mL) is about one-quarter of the amount of red cells in a whole blood donation. If you donate platelets at the maximum frequency of 24 times per year, your annual red cell loss is quite high, but still within the new limit. Thus, we believe that most of our platelet donors will not be affected by the new FDA red cell limit calculation. If, however, you donate whole blood in addition to making platelet donations, your total red cell loss might exceed the new limit.

As you come in for your platelet donations over the next few months, we will be checking your red cell loss against the new limit. If you are close to or above the new limit, we will help you reschedule and adjust your visits to get you to the new limit by October. Within the prescribed limits, we will tailor collections with you to maximize the benefit to patients and the research community on the basis of your particular characteristics. Most importantly, we want to ensure your continued good health, comply with safety regulations, and keep you donating forever. If you have any questions about how this change might affect you, please ask your nurse the next time you donate.