Film inspired by Lewiston mom premieres

LEWISTON — Four years ago, Doreen Gummoe was a mom on a mission.

A mission to help her three young daughters — Jordan, Julia and Jorja Flynn — stay healthy despite their Fanconi anemia, a rare genetic blood disorder that destroyed their bone marrow and made them extremely susceptible to cancer.

She’s fighting to increase America’s pool of bone-marrow donors by getting the federal government to allow some donors to be paid — a significant change she believed would help both donors and those in need, like her daughters.

Four years later, the Lewiston mom is still fighting, both for her daughters’ health and against the federal government. But she’s getting attention for it in a new way.

Today, a short film inspired by her battles will premiere at the Maine International Film Festival in Waterville.

“I cried (when I saw it),” Gummoe said. “It shows how desperate a parent can be. It hits home right off the bat.”

The 16-minute film titled “Everything” follows a single mother whose daughter’s bone-marrow donor suddenly backs out of the procedure, a common occurrence in bone-marrow donation. Although not fully true to Gummoe’s story — there’s a fictional scene, for example, in which the mother tries to bribe the donor to go through with the donation — the premise was inspired by Gummoe and her family.

“In many ways, Doreen’s story is even more dramatic — what we had to do is simplify this story,” said John Kramer, a spokesman for the Institute for Justice, a nonprofit, Virginia-based public interest law firm that helped Gummoe sue the federal government several years ago and produced the short film premiering this week.

Gummoe’s oldest daughter, Jordan, was born with Fanconi anemia, known as FA, 18 years ago. Most FA patients develop bone-marrow failure and require transplants.

Transplants are most successful with a sibling donor, but neither of Jordan’s older brothers matched. Gummoe and her then-husband decided to have another baby with the help of in-vitro fertilization, which could all but ensure they’d have a child who was both a bone-marrow match and free of the disease.

But an error occurred during testing, implantation, or both, Gummoe has said. When twins Julia and Jorja were born 11 years ago, both had FA, too.

Jordan ultimately received a bone marrow transplant from a stranger when she was a young teenager. The donor was the only one who matched Jordan and was able to donate at the time.

“Had Katie, her donor, decided to say, ‘I’m all out of sick time at work, I can’t afford it’ and she couldn’t do it, Jordan would have died,” Gummoe said.

About half of matched donors never show up to donate, Kramer said.

Hoping to help donors ease the financial burden of donation and give them an incentive to see the process through, Gummoe became lead plaintiff in a lawsuit spearheaded by the Institute for Justice.

For years, federal law has prohibited bone-marrow donors — and organ donors — from being compensated. The suit argued that advances in medicine made bone-marrow donation more like plasma donation, which can be compensated under the law, than to kidney donation, which cannot.

In traditional bone-marrow harvesting, doctors stick a needle through a hip bone and remove bone marrow. The alternative method, peripheral blood stem cell donation, is now used most of the time. In stem cell donation, donors receive injections to increase the production of blood-forming stem cells that are then siphoned out of their blood in a process similar to dialysis.

The lawsuit was successful: The 9th Circuit Court of Appeals ruled that the new form of bone-marrow donation did not fall under the category of organ donation as the law was written and could be compensated. At least one nonprofit was planning a pilot program to see how compensation — a $3,000 housing allowance, scholarship or charity donation — might boost bone-marrow donation.

But in 2013, the U.S. Department of Health and Human Services proposed a new rule that would explicitly include peripheral blood stem cell donation in the definition of organ donation. With that looming for nearly three years, no group has felt comfortable moving forward with a pilot program to compensate donors.

“If they were to raise money and start pursuing this research and then the department issued its rule and blocked it, it would be a waste of their time and resources, which are precious,” Kramer said. “In good faith, they couldn’t move forward.”

The department has until the end of this year to either move forward to prohibit bone-marrow donors from being compensated or drop the issue. A Health and Human Services spokesman said Wednesday that the department was “working toward being responsive to this deadline.”

The department has said a ban on compensation would help ensure that, among other things, donors aren’t coerced or exploited.

Gummoe and the Institute for Justice believe a ban only ensures that there aren’t enough people willing to donate.

They hope “Everything” will draw attention to the continuing battle over bone marrow compensation. The short film will play twice at the film festival — Thursday at 3:30 p.m. at the Waterville Opera House and Saturday at 9:30 p.m. at Railroad Square Cinema.

It has also been accepted at a number of other festivals, including the Atlanta Shortsfest and the FirstGlance Film Festival in Los Angeles.

Today, Jordan is 18 and doing well. However, 11-year-old Jorja will need a transplant soon, Gummoe said.

Only one potential donor is a match.

ltice@sunjournal.com

The short film “Everything,” based on a Lewiston woman’s continuing battle to legalize bone marrow compensation will premiere at the Maine International Film Festival in Waterville this week with two showings: