Sarah Marie Jha still remembers how exhausting it was just to walk around the house. She had no energy to play with her young daughter, Mila. And fluid started to pile up in her abdomen.
"My belly got so big that my neighbour thought I was pregnant again," she says.
She had cirrhosis from a rare liver disease called primary sclerosing cholangitis. The condition affects the ducts which drain bile from the liver, causing serious health issues including organ failure.
Sarah had to take leave from work as an engineer in a steel plant in Hamilton at the end of 2015. She got listed for transplant in October, 2017, and finally got a new liver – from a living donor who came forward to help her – in November, 2018.
"My co-worker saved my life, and I was just so blown away that he decided to do this for me," she says.
Sarah didn't know it at the time, but there are systemic issues that create barriers for women waiting for liver transplantation.
Studies show that it can be up to twice as difficult for women to receive a liver, either from deceased or living donation. As a result, women are at 8.6 per cent higher risk of dying while on the waitlist.
In an upcoming publication, Dr. Mamatha Bhat, a hepatologist with the Soham & Shaila Ajmera Family Transplant Centre at UHN, will present her findings on how increased access to living donation can help address these disparities for women.
"We need to reform the system to make it more equitable, but that is a complex task," says Dr. Bhat.
"Improving access to living donation can help save lives of our female patients, while this work is in progress."
Sex barriers in liver transplantation
There are several factors that impact women's access to liver transplant. Recent studies suggest, for example, that the Model for End-Stage Liver Disease, known as the MELD Score, has probably been quietly discriminating against women.
The MELD score takes into account test results for the INR (a blood clotting measure), bilirubin, creatinine, and sodium. This number defines, in the medical world, who needs a liver transplant more urgently.
However, a problem that wasn't detected until recently is that women's tests can be misleading. Women can have an apparently better result compared to a male patient, and still be sicker. This is mainly because women tend to have a lower creatinine at any degree of kidney dysfunction than men, which disadvantages them.
"We've seen that women's tests frequently don't accurately reflect their degree of illness," says Dr. Bhat.
Another factor is the average deceased donor size. Most deceased donors are men, who tend to be taller and larger than women. Therefore, their livers tend to be a better match for men on the waitlist.
"It struck me to observe this gender inequity in liver transplantation, and it is very important to study how we can address this issue," says Dr. Bhat. "Additionally, it speaks to the general need to increase awareness in our communities regarding organ donation."
Speaking up about living donation
Although she wasn't aware of sex barriers at the time of her surgery, learning about Dr. Bhat's findings made a lot of sense to Sarah. Before being listed for transplant, she remembers how her test results many times didn't seem to reflect how sick she felt – her tests may not have fully reflected her degree of illness, as she is a petite woman.
Sarah also believes women tend not to speak up as often as man about their health, and that can contribute to the problem.
"We have to get better at advocating for ourselves."
Her message to women out there waiting for a liver transplant?
"Don't give up. Talk to your friends and families about organ donation," she says.
"It is truly lifesaving and life-changing. At times, we tend to be quieter, but we should not be afraid to talk about our diseases and to understand that our lives are worth it."
Join us for Living Donation Week
Access and equity in living donation are the main theme for Living Donation Week, an online event hosted by UHN's
Centre for Living Organ Donation starting Monday, September 14.
Dr. Bhat's will present the webinar "Sex-Based Disparities in Liver Transplantation & Living Organ Donation" on Thursday, Sept. 17 at 12 p.m. Other webinars, panels and celebration events will be happening during the week. Visit the
Living Donation Week page for the full program.
"Living Donation Week will create unique opportunities for patients, families and the community to have important conversations around living donation," says Paula Neves, Lead at UHN's Centre for Living Organ Donation.
"We hope to raise awareness of living donation, promote education, while also celebrating our incredibly generous living organ donors who make this program possible."
