Photo Credit: Natali_Mis

Patty Keating breaks down the role of advocacy groups, long-term monitoring, and how to better understand the emotional impact of hypoparathyroidism.

In part 1, Patty Keating, executive director of the HypoPARAthyroidism Association (HPA), discussed the need for improved physician awareness of hypoparathyroidism. Now, Keating breaks down the role of advocacy groups, long-term monitoring, and how to better understand the emotional impact of this disease.

PW: What role can advocacy groups play in bridging gaps between patients and providers?

Keating: Advocacy organizations like the HPA are crucial in connecting patients with healthcare providers. After five years of volunteering with HPA, I was inspired to join the board as executive director, motivated by the potential for treatment advancements and the need for strategic leadership. HPA provides key resources, including educational materials, support networks, and an online tool for finding specialists, helping patients feel less isolated and ensuring they receive the care they need. Our annual patient conference brings together patients, caregivers, and healthcare professionals for fellowship and education. With the support of our medical advisory board, we share the latest treatment and research advancements. Now hybrid, the conference is live-streamed and has reached over 22 countries, raising global awareness and supporting those affected by hypoparathyroidism.

Hypoparathyroidism is a rare disease, and as some physicians have agreed, there is limited education about hypoparathyroidism when they are learning to become healthcare providers. At HPA, we work with experts worldwide to educate patients and physicians. We attend industry events like ENDO, ASBMR, NORD, and AACE, where we host booths and, more recently, bring the patient perspective to CME classes. We also hosted an externally led patient-focused drug development meeting with the FDA and are collaborating with the Canadian Drug Agency to educate on hypoparathyroidism. We were excited to participate in the Parathyroid Summit, where experts worldwide helped update international guidelines for treating hypoparathyroidism. We included the patient’s voice in this important process.

With hormone replacement therapy now available, what should physicians focus on in terms of long-term monitoring and management to prevent complications?

Long-term monitoring and management include regularly assessing serum calcium, albumin, and phosphorus levels, as well as monitoring renal function and imaging the kidneys to detect early signs of calcification. Incorporating validated tools to evaluate quality of life during routine checkups is also crucial, as many patients report this is often overlooked. Additionally, providing access to at-home devices for monitoring serum calcium levels can empower patients to take an active role in their care, helping to prevent fluctuations that could lead to complications. At a minimum, patients should have standing lab orders to monitor their levels until a calcium monitor becomes available.

When a patient is on parathyroid hormone therapy, they must understand the symptoms of hyperparathyroidism, as there could be times when they may fluctuate. A patient-centered approach, combining regular screenings, effective communication, and support tools, can significantly enhance outcomes and quality of life for those living with hypoparathyroidism.

How can hearing patient stories influence physicians’ understanding of the emotional and physical impact of hypoparathyroidism?

Hearing patient stories allows physicians to truly understand the physical and emotional challenges of living with hypoparathyroidism. It’s not just about lab results or numbers; it is about the daily struggles we face, like managing symptoms that aren’t always visible or dealing with the overwhelming burden of treatment. For physicians, sharing their limited experience is okay with patients instead of trying to downplay symptoms. When I share my experiences, I see how it helps doctors see the bigger picture and approach care with more empathy and understanding. Advocating for myself has been essential, and through organizations like HPA, I’ve connected with others who are raising awareness and pushing for better solutions. By listening to our stories, physicians can learn to provide more personalized care, improving our quality of life and overall outcomes. This condition may be rare, but that doesn’t mean it should be overlooked or minimized.

Missed part 1? Read it here!