Patient Advocates: Advancing Research from outside the Lab

doi:10.1016/j.stem.2011.04.014

Anna C. Davison Santa Barbara, CA, USA

Scientists aren’t the most likely models to star in a calendar, but Sabrina Cohen, a quadriplegic since a car accident at 14, believes they’re well deserving of the honor. To raise money for her Sabrina Cohen Foundation for Stem Cell Research, she put together a CELLebrity calendar starring scientists in the field.

The work they’re doing gives people like me a lot of hope, and it gives people the will to do something to give back to the cause, Cohen says.

Advocates like Cohen are hard at work raising awareness of the promise of stem cell therapies, combating misconceptions about the field, fundraising to support research, and pushing at both the state and federal levels for the support and freedom for scientists to advance their work. Some make frequent appearances on Capitol Hill, some recruit celebrities to get behind the cause, and others take their message to schools and community groups.

Whatever their strategy, advocates say scientists are crucial partners in education and advocacy.

We need to present a united force to convince and educate society, says Daniel Heumann, who was paralyzed in a car accident shortly before he was due to begin college. Heumann, a motivational speaker whose hobbies include wheelchair tennis and jumping out of planes, helped found Michigan Citizens for Stem Cell Research & Cures and sits on the Board of Directors of the Christopher & Dana Reeve Foundation. To be an effective advocate, Heumann says, you need to be able to educate peoplethey could be regular people or legislatorson the issues you’re passionate about.

We can’t entirely control the negativity that’s going to come with the area, Cohen adds. The best I can do is educate people properly. She’s targeting schoolchildren, hoping that students will take information home to their parents, and that some might grow up to do charity work.

Heumann has made it his mission to stand up for translational research, and he’s particularly enthusiastic about supporting young scientists via the Daniel Heumann Young Scientists Fund of the Christopher & Dana Reeve Foundation. They are the ones who are going to find the cure, he says. This is the future of science, but I have to fight for the young scientists to make sure they get the funding they need. Heumann regards himself as a venture capitalist, investing in promising researchers and helping them along the way to big grants and groundbreaking advances.

Don Reed, on the other hand, considers himself the advocacy equivalent of a middle linebackerthe position his son, Roman, played until he broke his neck on the football field. I roam back and forth and fight where I’m needed, Don Reed explains. I call people and ask, What’s happening? Tell me how I can help you.

I want every state in the nation to have the freedom to do the research, says Reed, who is now monitoring the fights in Minnesota, Oklahoma, and Florida, among others. We have to attack this on a national level, he adds, with local cooperation, for scientific freedom and funding.

Reed, who believes the private foundation approach is limitedthere’s not enough money there, helped pass California’s Roman Reed Spinal Cord Injury Research Act of 1999, which has provided an average of $1.5 million in public research funding per year. Several other states have laws that add a surcharge to traffic tickets to fund researchand Reed is currently pushing for that method of funding to be adopted by the California legislature.

Marie Arturi is also pursuing a somewhat unusual fundraising strategy in order to support stem cell research through the Daniella Maria Arturi Foundation, which she and her husband established after losing their daughter to the rare blood disorder Diamond Blackfan Anemia (DBA). Inspired by that work, Arturi has developed what she describes as a social communications platform called buncee.com “My hope is that someone will love it and buy it and I’ll be set up for funding.

Arturi’s foundation has already raised several million dollars for DBA research through more conventional approaches, such as hosting benefit events. She is also particularly gratified to have cultivated a growing community of scientists working on the disorder. There are no words to describe what a miracle this little effort has been, says Arturi, who is effusive in her praise and appreciation for the scientists in the DBA family.

“I couldn’t do what I do without them, she says. I want to say, “Thank you, thank you, thank you.

Arturi has also seen the benefits for researchers. Patient advocates can offer bench scientists, in particular, an encouraging reminder of the importance of their worka broader perspective that’s all too easily lost to the inevitable myopia of research.

An important part of this is connecting with what’s on the other side of the lab, Arturi says. “Once researchers get that exposure, I just see this amazing exponential increase in dedication. It really gets in their hearts.

Researchers, Reed says, can also gain valuable insights from patients about their conditions. He recalls a meeting where scientists working on therapies for spinal cord injury got an education. They thought the number-one concern was walking, but they found out there that it’s bowel and bladder control. “Some of them changed their focus after that.

He urges scientists to invite a patient advocate to meetings to ” talk about what they’re dealing with day in and day out.

Arturi likes a “light touch” of advocacy at scientific meetings. “We’re not killing them with, You have to cure this disease. We’d love that, but we know it’s not practical.

People with spinal cord injuries and other conditions that could benefit from stem cell therapies are hopeful, Reed adds, but not hopelessly naive. There’s a misconception that they’re ignorant and willing to try anything, but the advocacy community is educated and informed, he says. Give us information, tell us the risks, have us at the table.

Perhaps I won’t get up and walk, Cohen remarks, but maybe I’ll regain the use of my hands.

Heumann, who’s been in a wheelchair for 26 years, says, “Some sort of movement or sensation would be the greatest gift in the whole world.

He wants more scientists to join him on the frontlines of advocacy. “We need to be a united force to educate key decision-makers who really need to understand what we’re trying to accomplish. No one groupnot scientists, not patient advocates, not industry leaderscan do it alone. Scientists, Heumann says, shouldn’t hide in the lab or behind their PowerPoints. “We’re on the front lines fighting for them, fighting for their work, he adds, but many scientists don’t do what they need to do to allow us to understand the science.

By sharing their work with nonscientiststalking to media, to patients, to policymakersresearchers can build support for their efforts and help patients make informed decisions, advocates say. Cohen suggests that scientists should not only pay attention to the work of their peers, but also keep an eye on the miracle cures and breakthrough treatments being peddled by quacks around the world.

They also need to know what threats are coming, what threats could kill their research,Reed says. If the educated don’t take part, the ignorant will be all too glad to make the decisions. There are a few scientists who will stand up and fightscientists helped California’s embryonic stem cell funding initiative succeed in 2004, Reed points outbut not enough.

Anytime I meet a scientist, Reed says, “I try to find out what they’re doing and what help they needand I also ask them what they’re doing for the cause.