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The US Social Security Administration has added pericardial mesothelioma to its list of compassionate benefits, expediting the disability application process for this very rare cancer.
Her decision was motivated by the work of Missy Miller, MD, director of medical outreach at the Mesothelioma Center. I applied with the Social Security Disability Office nearly a year ago on behalf of a patient.
The Compassionate Allowance Program is for illnesses and severe medical conditions that automatically meet Social Security criteria for disability benefits. It shortens the often time-consuming application process.
Pleural mesothelioma and peritoneal mesothelioma, two of the most common forms of cancer, have been part of the program for years, but pericardial mesothelioma has not been included – until now.
“This is huge, really a big deal for these patients,” Miller said. “I am very humbled and excited about what we did. I was helping one patient in this case, but now we have helped patients everywhere.”
Shedding light on pericardial mesothelioma
Pericardial mesothelioma is a rare asbestos-related cancer that originates in the pericardium, the protective membrane that lines the heart. It represents only 1% of all mesothelioma cases in the United States, which is estimated to be about 3,000 patients annually.
Because clinical symptoms are usually nonspecific, diagnosis often comes late in disease progression when treatment is only palliative. The diagnosis sometimes doesn’t come until an autopsy. Patients often die within six months of diagnosis, a period during which a typical disability claim may still be pending.
On behalf of her patient—a 32-year-old woman being treated at Baylor Institute of Medicine—Miller questioned why pericardial mesothelioma was not part of the Compassionate Allowance Program. To support her case, she used documents from Asbestos.com and the National Institutes of Health.
“I think the reason it wasn’t listed before is because it’s so rare, it’s so hard to diagnose,” Miller said. “They probably never asked anyone to apply for it or ask for it to be listed.”
She was told shortly after her application that the application would receive a thorough review by Social Security Administration medical consultants and policy analysts.
On the morning of August 16, the day the announcement was made, Miller received a personal email from Social Security officials:
“Thank you for submitting pericardial mesothelioma for consideration as a condition of compassionate allowances (CAL). We are pleased to inform you that we have added mesothelioma to our list of CAL requirements.”
Helping patients through the Mesothelioma Center
Miller has been providing mesothelioma patients with medical, financial, and emotional support for over a decade, but usually on an individual basis. This time, she helped several patients at once, and was a pioneer in making progress for all.
“When we placed our order, I wasn’t sure what we would get back,” she said. “We have always worked hard to get the best for each patient. The hard work really paid off this time around. This appointment changes a lot.”
Disability benefits for illnesses in the Compassionate Allowances Program are awarded based on medical confirmation of the diagnosis alone, as opposed to less severe cases. More than 700,000 Americans have been approved through this accelerated process.
For many, the appointment also provides much-needed immediate health insurance with government assistance.
Pericardial mesothelioma was one of 12 new cases approved this week. Other conditions included Charleiwax Saguenai’s spastic ataxia, choroid plexus carcinoma, Hodgkin’s lymphoma, and congenital Zika syndrome. There are now 254 conditions in the list.
“The Compassionate Allowance Program helps us address barriers by helping to expedite the disability application process for people who are likely to be approved for benefits, given the seriousness of their medical condition,” said Kilolo Kigakazi, acting Social Security Commissioner, in the announcement. “Everyone who qualifies for benefits under the programs we run should get them.”
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