Make a difference – partnering for progress – ACARE: Best practices with Member Organizations and physicians

HAEi RPA Fanny Schappler took the first session after lunch, dedicated to exploring the importance of patient and physician collaboration, and how the ACARE initiative provides a great template to improve awareness, diagnosis, and management of HAE in a country. Fanny was joined by Dr Ankur Jindal, a consultant in pediatric clinical immunology and rheumatology at Manipal Hospitals (Old Airport Road), and Ravleen Kaur, the Secretary and Board Member of HAE India, to discuss an example of this collaboration.

Establishing that the vast scale of India poses a challenge for diagnosing a rare condition like HAE, Fanny asked Ravleen what life was like for people with HAE before the collaboration between an ACARE physician and the patient organization. She described a situation as: “Really very tough for patients in India for many years. The journey before diagnosis was long and frustrating, with many experiencing symptoms without knowing it could be HAE.” Ravleen said that her family underwent allergy tests, but–of course–got no answers. Because of the size of India, patients must travel long distances to get answers, and many more will live with uncertainty, fear of attacks, and feeling alone.

Standing against this situation is the change that has occurred in the last six or seven years. Thanks to one extremely committed doctor, Ankur Jindal, and the hard work of patient advocates, a collaboration has been built. Since Fiona Wardman of HAEi supported a meeting of patient advocates and clinicians in 2019, awareness has greatly improved, and the availability of medications in India has changed: there is now at least on-demand treatment for almost all patients in the country. Dr Jindal acknowledged that while doctors may try, these successes are largely due to the hard work of patient advocacy.

For Ravleen, there is gratitude for having Dr Jindal and his colleagues. Together, they have given patients a sense of relief and hope. It also means that HAE India can be much more confident in recommending patients to him.

Returning to the vast size of India, the group discussed the importance of Virtual Angioedema Centers (VAC). These enable patients from across India to have virtual consultations with Dr Jindal and a select group of colleagues. The availability of VAC has ultimately led to better care for patients, with diagnoses and treatment plans in place. The number of ACARE centers is increasing, as is the number of trained and motivated clinicians. It is important, as there are HAE patients who have treatment but who do not receive it during an attack due to a lack of physician knowledge. Dr Jindal and colleagues often support less-experienced doctors with information on using specific HAE medicines.

All of this progress is leading to HAE becoming more well-known in India, according to Ravleen. Patients even contact them during attacks to seek advice and support. She said this is quite scary, but she can direct them to doctors in their State who can provide C1 inhibitor. “It is this connection between patient organization and physician that really builds a strong safety net,” she said.

For Dr Jindal, the work continues. He indicated that there are now around 800 diagnosed patients in India, but the estimated number of cases is around 30,000. He said, “We know they are there. We just need to find them.”