ALAMEDA (KPIX 5) — Every three minutes someone is diagnosed with a blood cancer; and the family of a Bay Area four-year-old worries she may be one of the next.
Norah Gratz-Lazarus was recently diagnosed with a rare genetic disease called Fanconi anemia, which – if untreated – increases her risk of leukemia or bone marrow failure to 90 percent.
The good news: there is a cure for blood cancers like leukemia and lymphoma. The bad news: “We found out last week that there were no matches in the system,” explained Zachary Gratz-Lazarus, Norah’s Dad.
Struggle to Find A Match
While National Marrow Donor Registry does have 30 million donors worldwide, finding a match is rare.
Minority and mixed-race populations, like Norah who is Ashkenazi Jew, are underrepresented in the registry. Be The Match reports that black patients have about a 23 percent chance of finding a match, Hispanic or Latino patients have a 46 percent chance, and while Caucasians make up a majority of the donors, even white patients only have a 77% chance of finding a marrow match.
Adding to the struggle, half of the potential donors who do sign up on the registry are ultimately decline to donate when asked.
“It’s honestly Heartbreaking,” said Gilbert Martinez of Be the Match. “Because for most individuals, you only get one match.”
Martinez explained, unlike matching one of the 8 blood types, matching marrow tissue is much more complex due to the sheer genetic diversity in each ethnic group. “There are roughly about 42 trillion variations.”
Like Norah, 70 percent of patients don’t have a match in their own family. However, Norah’s doctor at UCSF says the solution is simple. “If you increase the number of people in the registry, the likelihood of finding a match is going to increase,” explains Kristin Shimano M.D.
The Norah Needs You Campaign
While Norah doesn’t need bone marrow right now, she likely will in a few years. So her parents have made it their mission to increase donors on the registry with their “Norah Needs You” campaign.
Their Alameda synagogue is targeting outreach to Ashkenazi Jews, since that will increase the likelihood of finding a compatible match for Norah. However, her family stresses that they want people of all races and ethnicities to sign up through their campaign. Her parents point out that even if you aren’t a match for Norah, there are thousands of others out there right now waiting for a match.
“It’s kinda like winning the lottery,” Norah’s dad explains. “The more tickets that are out there the more likely some is going to have those numbers.”
As of mid December, the “Norah Needs You” campaign signed up nearly 1,000 people. However, Norah’s birthday is one week away and between now and then more than 3,000 people will be diagnosed with blood cancer, treatable only if they find a match.
Norah’s family has now increased their goal is 10,000 new signups.
How Easy is Donating?
The process to sign up is simple: sign up online and Be The Match sends you a kit. Then simply swab and send it back.
As for the actual donation process, Be The Match says it is less invasive than it use to be and easier than most people think. Donors are generally in and out of the hospital the same day.
In some cases they can gather the necessary cells from a vein in your arm, in other cases they must withdraw liquid marrow. However, they say the marrow draw itself is painless and recovery is described as a dull ache similar to soreness after a workout.
California law mandates your employer give you up to five days paid leave to donate bone marrow and Be the match covers any and all costs associated with donation.
Norah’s parents are now lobbying California lawmakers to introduce a law similar to one that was just passed in Washington State. It mandates that the DMV provide information about the bone marrow registry to anyone applying or renewing a driver’s license. Though, Norah’s family the would like to see something more robust here.
They note, if little Norah’s website can sign up a thousand people in a few weeks, image how many potential donors the state could add to the registry with wide-spread outreach and information.