‘Charlie’s Law’ bill would bolster marrow donor registry

“Having a universal approach would dramatically change the awareness and the number of different kinds of donors we have.”

Charlie Huang — for whom the bill is nicknamed “Charlie’s Law” — is a veteran Santa Clara County prosecutor whose recurrence of leukemia earlier this year spurred an Asian American-spearheaded donor drive both to help him and draw public attention to how the current state of the national marrow registry has meant that Asian Americans have a 41% match rate for an adult marrow donor, compared with a 77% match rate for their White counterparts.

After Huang was featured in a May article by this news organization, he said he found a donor match and is now championing Low’s proposed law to help people avoid his experience of reaching a point where the options for treatment looked bleak.

“There were some really dark days in May, looking for a donor and finding none,” he said.

Huang added that by increasing and diversifying the donor registry now, medical professionals and organizers can decrease the latency between when a potential donor registers and can contribute bone marrow.

“I can’t believe nobody has thought of it or done anything like this until now,” Huang said of institutionalizing bone marrow donor solicitations in the state. “It’s so easy to be a marrow donor … and you can save multiple lives.”

Under the bill proposed by Low, DMV registrants would be asked either during an online application or in person whether they want to be entered into the National Marrow Donor Program. If online, a prospective donor will be automatically directed to bethematch.org, and in-person applicants will be given similar information.

Joining the national registry is simple, provided that a person meets the general eligibility requirements of being a U.S. resident between the ages of 18 and 44: A self-collection kit then will be sent to collect a cheek swab, which will contain most of the genetic data needed to pinpoint a marrow match.

Low said one of the catalysts for the law was knowing about Huang’s experience, and once he saw the news story, he knew the time was right.

“Other than sending good thoughts and prayers, you can register in this donor program,” Low said.

“California is the fifthlargest economy in the world, and nearly everyone interacts with the Department of Motor Vehicles. This is easy, and we can amplify this on a larger scale.”

Muffly said some of the difficulties in getting people to register is an absence of wider education about what a donation entails.

Marrow is extracted from a donor in a medical setting under anesthesia and typically entails a moderate recovery period of a few days.

“It’s a very doable, extremely low-risk procedure,” she said.

“And you can donate bone marrow stem cells and will have plenty more to come.”

Jennifer Mcatee, a donor search coordinator for Stanford Health Care, said increasing volume and diversity in the national registry is not just about finding a marrow match for ethnicities that are lacking representation.

It’s also ensuring that there are enough matching donors in the system that one will be available in the often-urgent circumstances in which a transplant is needed.

“We just want to make it fair for everyone,” she said. “You should not be denied your second life because of your heritage.”