Addressing Access Barriers for Patients with IgG4-RD, with John H Stone, MD, MPH

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John H Stone, MD, MPH, discusses the recent clinician-authored white paper from the Alliance for Patient Access: "Addressing Access Barriers for IgG4-RD Patients.”

As no drug has received approval from regulatory agencies, all drugs used to treat immunoglobulin G4-related disease (IgG4-RD) are technically off-label. The global standard of care involves using glucocorticoids like prednisone, which come with significant side effects, including glucose intolerance, diabetes, weight gain, elevated blood pressure, opportunistic infections, skin issues, neurological problems, and bone toxicities like osteoporosis. The complications arising from glucocorticoid therapy pose a significant challenge for patients with IgG4-RD.

Rituximab, a B cell-depleting agent, is one off-label medication showing promise in IgG4-RD treatment. Unfortunately, patients often face challenges accessing it due to insurance coverage issues.

In an interview with HCPLive, John H Stone, MD, MPH, professor of medicine at Harvard Medical School and a rheumatologist at Massachusetts General Hospital, discusses the recent clinician-authored white paper from the Alliance for Patient Access: "Addressing Access Barriers for IgG4-RD Patients.”

Stone explains access to approved therapies is central to addressing patient needs. The frustration arises when a patient is correctly diagnosed, and an effective treatment plan is proposed, but barriers prevent access to the required medications. The lack of access contributes to mistrust among patients, stemming from delays and misdiagnoses, highlighting the crucial role payers and health systems play in granting or denying patient access to medications.

Telehealth emerges as a powerful tool in addressing the complexities of IgG4-RD. Given its rarity and the limited awareness among practicing physicians, there is often a considerable delay in diagnosis. Telehealth could streamline the diagnostic process, potentially reducing misdiagnoses, inappropriate treatments, and unnecessary medical procedures that patients commonly undergo.

There is optimism regarding the potential approval of new therapies for IgG4-RD in the next few years. The growing understanding of the disease's pathophysiology has paved the way for targeted therapies that are expected to be more tolerable and effective than steroids. However, access challenges are anticipated, varying across regions and healthcare systems. Proactive efforts, including the collaboration between the IgG4ward! foundation and the Alliance for Patient Access, aim to address these access hurdles for patients as new therapies become available.

Stone serves as a member of the Alliance for Patient Access and is the founder and executive chairman of the IgG4ward! foundation, an organization dedicated to IgG4-RD advocacy, research, and support.