Having cancer or another serious illness can be a frightening and isolating experience, often with long-term physical and emotional after-effects even for those fortunate enough to be cured. Attending support-group meetings is not always possible, but thanks to e-mail and the efforts of two MIT employees, help for people dealing with two life-threatening conditions is as close as their keyboards.
Samantha Scolamiero, a senior library assistant in Dewey Library, underwent successful surgery in 1990 to remove a non-cancerous tumor from her brain stem area, but she was left with double vision and fatigue that prevented her from driving to brain tumor support-group meetings. Laurel Simmons, facilities coordinator at the Artificial Intelligence Laboratory, had a bone marrow transplant after she was diagnosed with leukemia nine years ago. Though she is cancer-free today, she had a relapse in 1990 and now has chronic graft-vs.-host disease that sometimes results from transplant procedures. The two women independently decided to start virtual support-groups known as BRAINTMR and BMT-TALK where people anywhere in the world can use e-mail to ask questions, discuss research on their conditions, share their experiences and provide encouragement.
"There's often a real desire for people who've recovered to help others who come after them," Ms. Simmons said in explaining her motivation in creating and maintaining an e-mail list with 450 subscribers. "You lose a tremendous amount of control over your life when you're sick." Electronic messages that offer support, as well as knowledge about the disease and what others went through, "help mitigate that trauma tremendously," she said. The service is free to subscribers, and past messages are available in archives.
Ms. Scolamiero has seen the number of subscribers on her list (now about 850) roughly double each year since it was established in 1993. Both lists generate up to 50 e-mail messages per day. Ms. Scolamiero estimated that three-quarters of list members are patients or their families, while the remainder are researchers and medical professionals. Subscribers generally feel more free to express themselves among their peers (perhaps aided by the relative anonymity of e-mail), so doctors on the list get a chance to listen and find out what patients are thinking, the women said.
"They don't always get that opportunity in a clinical setting," Ms. Scolamiero noted. "They're surprised by what they're hearing and thankful for what patients are saying." An oncologist at Brigham and Women's Hospital, where Ms. Simmons underwent experimental interferon treatment after her relapse, is a member of her bone marrow transplant list, while another from South Africa helps administrate the brain tumor list.
Subscribers don't give each other medical advice, but they often raise issues that patients can discuss with their own doctors. For example, one patient looking for a palatable way to take cyclosporine (a drug that suppresses the body's rejection of bone marrow and other transplants) asked if anyone else on BMT-TALK took it with grapefruit juice, Ms. Simmons said. Another list member who saw the message recalled that grapefruit juice could block an enzyme that aids in the absorption of cyclosporine and suggested the patient check with his doctor first. Physicians can't foresee every question their patients will have, and the lists can provide information that helps patients work more closely with them.
Because of improved therapies, more patients are surviving and living longer, but that also means more people have lingering health problems such as those experienced by Ms. Scolamiero and Ms. Simmons-problems that don't always get enough attention from doctors intent on treating the primary disease. "E-mail lists are wonderful places for dealing with those secondary issues," Ms. Simmons said.
The lists are also an avenue of support for people with more severe problems that restrict their mobility. "You don't have to leave your bedroom or living room," Ms. Simmons observed. "It ends a very powerful isolation." Also, those who have been disfigured by disease or surgery can converse without their appearance being an issue. "On the Internet, they get to be the person they really are inside," she said.
Inevitably, some patients on the lists lose their battle, and the death of a virtual support-group member is difficult for other correspondents even though they have never met the person. It brings up the question of "how to grieve in cyberspace," Ms. Simmons said. "The answer is, not well. I haven't found a good way to address that."
People on the two lists are now getting a chance to match faces with e-mail addresses. The first meeting of BMT-TALK will be held this summer in Baltimore; many BRAINTMR members gathered at the National Brain Tumor Foundation conference in San Francisco this week, and 45 people also met at a retreat organized by Ms. Scolamiero on Cape Cod last year.
Her work on BRAINTMR has expanded to more general advocacy on behalf of patients at other events. She will speak for the second straight year at the Harvard Medical School Division of Continuing Education during a three-day course on "The Computer as a Patient's Assistant," and she has also spoken at symposia in New Orleans and Chicago.
Showing physicians what the e-mail groups are and what they can accomplish is another way to help doctors and patients work more closely on disease management and decrease miscommunication and mistrust on either side. "We need to get to doctors and show them we're allies on this," Ms. Simmons said.
A version of this article appeared in MIT Tech Talk on March 13, 1996.