Gaining access to that top-notch doctor or medical center, never easy for any patient, can present a larger hurdle for someone with an uncommon malignancy, says Marty Rosen, executive vice president of marketing and cofounder at Health Advocate, in Pennsylvania, which provides health advocacy, wellness and other services.
“I think that the challenge is probably exacerbated for these people who have rarer or esoteric disease, for no other reason than that there is probably a smaller universe of these providers, especially top docs or top centers of excellence,” Rosen says. “That probably creates even more of a potential logjam.”
Given the challenges involved, Rosen and others who work with patients advise them to gather key medical information in advance and prepare to make their most compelling case.
Ideally, the patient’s local doctor should call on the patient’s behalf, Rosen says. If that’s not feasible, a close family member might be the next best choice, to advocate non-emotionally and articulately to a busy office assistant who is triaging a multitude of ill patients, he says. In just a few sentences, spell out what tests have been conducted, the precise diagnosis and why time is of the essence, he says.
Be sure to have all of the scans and medical records gathered digitally, so they can be imme- diately transmitted, says Marion Schwartz, chief advocacy officer at the Cholangiocarcinoma (bile duct cancer) Foundation. Request a digital copy of every test as soon as it’s been completed. In some cases, the actual tissue (known as a “block”) may be needed to perform specialized diagnostic tests to determine the tumor type.
Patients can also compare strategies online, whether it’s getting access to an off-label medi- cation or an overbooked physician, says Beth McNaughton, vice president of community for Inspire.com, which provides links to 200 online support groups. “It’s kind of like tips and tricks,” she says. “They’ll ask if there’s some way to get around it, or to get prioritized.”
Prepare to be polite, but persistent, Schwartz stresses. “Re-contact, re-email, re-call,” she says. “Call daily until you are heard.”
[Read "Rare Finds" on finding support and medical options when you have a rare cancer]