Posts Tagged ‘patient advocacy’

Our Brother’s Keeper

March 4, 2012

Several years ago I read a book titled “His Brother’s Keeper” by Jonathan Weiner.  It’s the true story of one man’s race against time to try and find a cure for his brother, who was stricken with ALS at the age of 29.  The book is subtitled, “One Family’s Journey to the Edge of Medicine”.  Indeed, this is where we must travel if we’re going to solve the neurological puzzles of paralysis from spinal cord injury.

As a writer, Weiner has an amazing ability to explain the complexities of neuroscience in terms that can be readily understood by a lay reader.  He also does a terrific job of portraying the impatience and urgency that patients and family members feel when confronted with the glacial pace of advancing therapies from bench to bedside.  The story repeatedly raises the philosophical question of how best to advance science, and towards the end quotes Art Caplan, a bioethicist at the University of Pennsylvania:

“Should the pace of medical research be determined by people desperately afflicted and their kin?  Is that the best way to move the science?  My argument would be no.  Just as it’s hard to do the best science when you’re heavily invested and have a financial interest in what’s going on, it’s very hard to interpret results when your vision is completely clouded up by love of your subject.”

Caplan’s point is well taken.  In our own SCI community we have seen many patients spend tens of thousands of dollars on unproven therapies that provide little or no benefit.  At times advocates have allowed passion to drive their research investments rather than reason.

On the other hand, to my knowledge Caplan is not living with a debilitating or life-threatening condition.  It’s frustrating and tiresome to sit in your wheelchair and listen to scientists, funders, and regulators counsel patience.  And of course we have the problem of our big-name charities losing sight of their initial purpose (see my previous post, “Chase the Vision, Not the Money”).

It’s time for the stakeholders in the SCI cure effort to keep watch over each other:

  • For researchers to share their scientific results openly and honestly;
  • For advocates to educate themselves about the science of regenerative medicine;
  • For charities and patient advocacy organizations to operate with transparency and purpose;
  • For regulators to consider the voice of the patient when evaluating risk and reward;
  • For those living with SCI to speak up and put a face on spinal cord injury.

Kudos to Dr. Keith Tansey for writing so eloquently on this subject here.  I met Dr. Tansey at Working 2 Walk in 2011, and I know that he is a compassionate professional who understands the frustrations of those living with SCI.  He, too, believes that the science will advance more quickly and safely if we as a community work together, with ongoing, open dialogue and a sense that we are “Our Brother’s Keeper”.

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Chase the Vision, Not the Money

February 3, 2012

I had no sooner finished posting this blog entry than the Komen Foundation announced that they were reversing their decision on funding Planned Parenthood.  No matter – the damage has been done and there are still lessons to be learned.  Read on.

This week the Susan G. Komen Foundation announced that they would no longer provide funding to Planned Parenthood for breast cancer screenings.  The decision sparked a huge firestorm of outrage as well as some serious investigative journalism into the reasons behind the defunding.  It’s a revealing story that illustrates the perils of prosperity and offers important lessons for charities and donors alike.

Komen is practically a household name, and its ubiquitous branding with pink ribbons, pink shoes, pink gloves, etc., is the envy of patient advocate organizations worldwide.  Like many advocacy groups, it started with a personal connection to a particular disease/condition.  When her older sister Susan died of breast cancer in 1980, Nancy Brinker Goodman founded SGK in her honor. 30 years later, Komen has annual earnings of nearly $400 million.

Komen has unquestionably raised awareness about breast cancer and pumped millions into research and public health education. And yet, in terms of finding a cure there really isn’t much to show for the effort.  Komen’s own website reports that the incidence of breast cancer has actually risen slightly over the last 30 years. During the same timeline, the mortality rate (time of diagnosis to time of death) has decreased somewhat for white women, but shows a slight increase for black women.

In their highly sophisticated marketing campaigns, they brand themselves as “Susan G. Komen for the Cure”, raising money via the “Race for the Cure”.  Unfortunately, rather than chase that vision they’ve fallen prey to the allure of money and the corruption of politics. Komen has built the kind of empire that is seen all too often in the “charitable foundation” arena; a marketing machine whose lavish salaries and political agenda drive its decision-making.

When you’re trying to keep a nonprofit viable it’s easy to lose sight of what got you started in the first place.  Everyone needs money to maintain and expand valuable programs.  But when your priorities shift from chasing the vision to chasing the money, the people and purpose you are supposed to be serving can get lost along the way.

We don’t know where Komen is headed from here, but nonprofit leaders would do well to take a lesson from this enormous blunder and the story behind it. Donors would be well-advised to take a hard look at the charities they choose to support, and do the research to find out where their money is actually going.  In the words of The Guardian’s Lizz Winstead,

“Last I checked, a pink breast cancer awareness toaster isn’t a substitute for affordable chemotherapy.”

Home for the Holidays

December 28, 2011

On December 1, 2002, my son suffered a C6/7 spinal cord injury when a wheel came off an oncoming truck and landed on top of his pickup.  9 years later, having graduated from law school and secured a full-time job, he came home to celebrate the holidays with his family.  Together we reflected on the remarkable journey he had taken to work his way back to physical, emotional, and financial independence.

If there is such a thing as being lucky in the wake of a spinal cord injury, it applies to my son.  Had his neck broken just a few millimeters higher, he would not have the use of his hands or arms.  He used every ounce of his energy and determination to achieve his goal of independence, but still could not have made it without the extraordinary support of his family, friends, community, and numerous strangers.  Such good fortune does not fall to many who are stricken with SCI.

While we celebrate and take pride in his accomplishments, we know that he represents the minority of those living with SCI.  According to the National SCI Statistical Center, at 20 years post-injury, only 35% of persons with a spinal cord injury are employed.  This statistic is not just a function of injury level; the employment rate for people with paraplegia is only slightly higher than for those with tetraplegia.  There are numerous social, psychological, and economic barriers that conspire to keep persons with SCI out of the work force.

The unemployment rate is but one of many “invisible” secondary complications of spinal cord injury.  While the media is full of “inspiring” stories about people living with SCI, much less is said about what goes on behind the scenes.  No one wants to start a pity party, but if we’re going to achieve “cure consciousness”, we need to speak the truth about:

  • the loss of bowel, bladder & sexual function;
  • psychological trauma & suicide;
  • loss of time, productivity, and often independence;
  • a host of other issues that accompany spinal cord injury.

For every heartwarming story in the media, there are hundreds more untold about people and the daily realities of SCI that no one ever sees.  The public is often led to believe that one can achieve recovery through hard work and determination alone; if this were true, the majority of survivors would be up and walking around.

I am extremely proud of what my son has accomplished since his injury, and at the same time appreciate that it was made possible by some good fortune and a remarkable support system that augmented his efforts.  I also know that he would readily embrace the opportunity for regenerative therapies that could give him back a healthy body.

A Revolution of Empowerment

November 17, 2011

In my opening remarks at Working 2 Walk, I spoke about the legacy of Justin Dart.  If you don’t know the name, Justin Dart is widely considered to be the Father of the Americans with Disabilities Act, and he was a lifelong disability and human rights activist.

Mr. Dart was stricken with polio at the age of 18, and this life-altering event set him on a remarkable life journey.  A series of encounters with other polio patients, with the writings of Mahatma Gandhi, and with 3rd world “rehabilitation” centers charted a course that eventually led to passage of the ADA.

Throughout his life of advocacy, Justin Dart embraced the principle of inclusiveness and shared his vision of a “revolution of empowerment” – a revolution that would “eliminate obsolete thoughts and systems”, and give every human being the right to develop his/her capacities to the fullest.  Shortly before his death in 2002, he published a manifesto of extraordinary wisdom and lessons for the future, “Toward a Culture of Individualized Empowerment” (it’s a worthwhile read).

One of the most humbling and frustrating aspects of paralysis is the loss of power, and in many cases, independence.  If Justin Dart were alive today, I have no doubt that he would join our effort to revolutionize the way we look at paralysis.  To teach the world that it is a curable condition, that we, the grassroots advocates, the cutting-edge research scientists, and the pro-active investors, can empower ourselves by organizing, educating and advocating until a cure is achieved.

On another note, this week’s news that Geron is dropping their clinical trial in spinal cord injury shocked and angered much of the community.  Personally, while this development is disappointing, 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 that hESC’s could be used safely in humans, a step that has hopefully paved the way for future therapies to pass through the regulatory process more quickly.


Enough With the Rats!

October 30, 2011

Working 2 Walk in Rockville was such a rich experience, I’ve had trouble deciding what to write about first.  For today, let’s look at the message of our international advocates, all of whom traveled great distances to meet the scientists at W2W and express an urgency to make the leap from working on the spinal cords of lab rats to those of humans.

Martin Codyre (Ireland), Harvey Sihota (United Kingdom), and Dennis Tesolat (via Skype from Japan) spoke frankly about what it’s like to sit in a chair and observe:

  • Promising therapies such as cethrin and hypothermia that never make it to Phase III trials because of financial and regulatory hurdles;
  • Large SCI organizations that use the word “cure” in their promotional materials, but spend relatively little on restorative research;
  • The lack of research attention paid to chronic injuries, when arguably that population has the greatest need and potentially the greatest return on investment;
  • A perceived lack of collaboration, commitment, and coordination amongst the stakeholders to push a product to market.

Of course it’s our goal at Working 2 Walk to motivate members of the SCI community to move beyond observation and into action, which became the focus of a lively exchange between the panel members and audience.

A few of the more powerful comments:

“I think that what we’re going to do is take up our own part of the job. What is it? If you’re paralyzed and you have a part time job, your full time job is moving this along. If you’re paralyzed and you have a full time job, your part time job is moving this along.”

“A lot of us are speaking about hope, and that’s awesome, but we need to talk about action.  I heard Jerry Silver say ‘I’m fine.’  Well, I’m happy that you are fine, but I am not fine.  I’m not here to criticize, but I want to know how we get well. Let’s start with a goal: we want clinical trials in two years and manage toward it.”

“We could be much further along toward a cure, which I define as getting out of the chair. We can’t be happy just with bowel and bladder, not that we all don’t want that. We have to take what we can in the short term but look toward the long. We need to push for a big change, or we’re all going to die in these chairs.”

Working 2 Walk itself is an effective catalyst for change, bringing together scientists who in the presence of consumers may be more motivated to collaborate, building the knowledge base of advocates, and creating unique networking opportunities.  But more needs to be done on a year-round basis.

Translation of therapies from the laboratory to the clinic is often called “The Valley of Death”.  In a recent Science Daily article about stem cell treatments for spinal cord injuries, Dr. Michael Fehlings noted that “At this time, a strong patient advocacy base would likely help provide momentum to help translate current research into clinical applications.”  Let’s get going.


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