The Chronic Disease Coalition is an advocacy organization that supports patients’ access to appropriate treatments and opposes discrimination toward any patient based on disease. In honor of National Kidney Month in March, we’d like to highlight the work of a kidney patient advocate: Pam Murchison.
Pam Murchison has been helping people nearly all her life. Starting when she was 9 years old, she would go door-to-door in her neighborhood collecting money for various charities. Kidney disease has also always been a part of her life. Born in Portland’s Emanuel hospital (the same hospital where the recent Portland Kidney Symposium was held), she was diagnosed with a severe kidney infection before she even left the hospital.
Doctors eventually had to remove one of her kidneys in 1978, when she was 20 years old. At that time, her kidney was supposed to be about the size of a grapefruit, but it had shrunk to the size of a quarter.
“They had to remove one tiny organ, but they left me a scar that looks like a road map from Seattle to New York,” she said.
Unfortunately the removal of one kidney did not prevent the failure of the other, and in 1996 she had to begin dialysis treatment. Many find the transition to dialysis to be a difficult one, and yet Pam has sought to make the most of the change by being as much a part of the kidney community as possible.
Whenever a new technician would start in her clinic, she would always offer to be the first patient they hooked up to the dialysis machine, walking them through the process as they went. On her own initiative she also started handing out plaques to the techs and nurses who cared for her, to demonstrate her appreciation.
Happy as she was to help her caregivers, Pam was always most interested in providing a network of support for her fellow patients. In 1996, the same year she started dialysis, Pam and social worker Yasuyo Tsunemine founded the Portland Kidney Group.
Today, the Portland Kidney Group is the largest kidney support group in the Portland area. It has been incredibly active over the past 10 years, sponsoring community walks, providing guides on kidney-healthy diets and working closely with the nonprofit Ride Connection to help dialysis patients get to their dialysis appointments.
This involvement has made helped Pam to see the bright side of her situation. She said her treatment and her involvement in the patient community has given her a chance to give back in a way she never thought she could before.
Her positive outlook falters, however, when the conversation shifts to some health insurers’ recent attempts to deprive patients of their care. Insurance companies have taken aim at those with chronic conditions in a number of ways, including by refusing to accept financial assistance from nonprofits to offset expensive insurance premiums.
“You would have to be a millionaire to afford dialysis without insurance, and without dialysis we would all die,” she said.
Her candor on the issue is understandable. While people like Pam have spent years helping patients and serving the kidney community, insurers across the country are attempting to implement policy changes that are harmful to patients. Sign up for the Chronic Disease Coalition to keep tabs on these issues and support Pam and other kidney patients.