NJ Nonprofit Advocates for Patients With Rare Diseases

Pathways to Trust helps patients to battle bias and overcome treatment hurdles.

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Compassionate care is increasingly becoming a standard part of curriculums at local medical schools and residency programs.

Like those programs aimed at improving patient outcomes, Mendham-based nonprofit Pathways to Trust emphasizes the doctor-patient relationship. But the organization is focused on the experiences of patients with rare diseases, especially sickle cell disease and Ehlers-Danlos syndrome (EDS).

Cheryl Lloyd, a professional advertising producer, cofounded Pathways to Trust in 2020 with Maybelle Lincoln, an actress and medical writer. They seek to give a voice to patients with rare diseases and to raise awareness about their needs. 

Patients with rare diseases are often misdiagnosed and face biases from doctors who don’t know what to make of their symptoms, such as pain or fatigue, Lloyd explains.

Nadia Bodkin, a Hamilton-based patient advocate and founder of the Rare Advocacy Movement, has three rare diseases, including EDS, which affects the connective tissues. She has first-hand experience with bias. 

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With most doctors, says Bodkin, “if you don’t fit into a traditional algorithm, you get chewed up.” In other words, if a problem isn’t easy to diagnose, doctors are often at a loss for a treatment plan. In some cases, says Bodkin, “you’re seen as having a psychological issue.”

As a person who describes herself as mixed race, Bodkin says the problem is even worse for patients of color. “White patients,” she says, “are believed.”

To promote a better understanding of patients with rare diseases, Pathways to Trust invites experts, including doctors, social workers and patients, to present the latest information on treatment to medical residents and to describe the hurdles these patients face.

To illustrate potential bias and other issues, Pathways to Trust often uses professional actors in live or taped simulations of real-world patient-doctor encounters. After watching the scenes, the residents break out into groups to discuss what they saw and “what could have been done differently,” says Lloyd.

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She provides an example of the sort of health care bias that might confront a sickle cell patient of color. “Sickle cell patients will go to the emergency room because they are in pain,” says Lloyd, “and many times, they are treated like a drug seeker because of the color of their skin.”

Dr. Stephen Trzeciak, chief of medicine at Cooper University Health Care and professor and chair of medicine at Rowan University’s Cooper Medical School, acknowledges that an awareness of racial biases—what he calls “compassion disparities”—goes back more than 20 years, when Dr. David Satcher, U.S. surgeon general during the Bill Clinton and George W. Bush administrations, first shed light on the issue. Trzeciak reports that Cooper recently received a federal grant to research health inequality.  

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Meanwhile, under a new grant from the Healthcare Foundation of New Jersey, Pathways to Trust is running its interactive sessions this semester at Rutgers New Jersey Medical School.

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