It’s Business, Not Personal

Let’s face it.  Finding curative therapies for paralysis is a business every step of the way.  It starts in the laboratory, where a research team has to:

  1. Sell an idea that will earn a grant to secure funding for lab equipment and personnel;
  2. Sell the progress of their laboratory research to raise more money until a hoped-for breakthrough is achieved;
  3. Sell the story of a unique discovery to a peer-reviewed journal for publication;
  4. Sell the science to an investor who will start the process of bringing it to market.
If and when a potential therapy goes to an investor, another cycle begins.  The investor has to:
  1. Raise the money to fund a clinical trial (millions of $$$);
  2. Write a comprehensive proposal to meet FDA standards for approval;
  3. In many cases negotiate with the FDA for months to years over therapy details – dosages, method of delivery, patients accepted, etc.  In the eyes of the FDA, many of the newer cell therapies are moving into uncharted territory, and they are acting with extreme caution;
  4. If the first phases of the trial are successful, continue to raise money to fund later phases.

All of the above has taken several years and an enormous amount of time, effort and money to achieve.  And at this stage the therapy is still not available to patients.  If in fact it has shown clear benefit and the FDA approves, what’s it going to cost the consumer?  Will insurance pay for it?

Seattle Genetics just made the headlines by setting the cost of its new drug for lymphoma at $100,000 for one course of treatment.  Bone Marrow stem cell transplants, which have been available for decades, can cost anywhere from $50,000 to $500,000 with many variables in insurance coverage.  Regenerative therapies for spinal cord injury will not come cheap.

When you’re living with paralysis on a daily basis, it’s easy to get frustrated with the slow pace of progress.  At the same time it’s important to understand that moving a therapy from bench to bedside can be just as complex a problem as repairing the spinal cord.  Once you grasp the process, it’s easier to decide where you want to direct your fundraising and advocacy efforts.

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One Response to “It’s Business, Not Personal”

  1. A Revolution of Empowerment « u2fp – the cure warriors Says:

    […] I don’t find it surprising.  As I’ve said before, achieving marketable therapies is business, not personal.  We can take some positives out of the fact that Geron made an enormous investment to demonstrate […]


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