The 18th meeting of the Board of Directors of the Immunodeficiency Patients Advocacy Association (IPAA) was held on Tuesday, September 7, 2021, from 9:00 to 10:30 AM, in person at the Immunology, Asthma, and Allergy Research Center.
The meeting was attended by Dr. Moein, Dr. Mohebi, Dr. Fazlollahi, Dr. Shah Mohammadi, Dr. Pourpak, Dr. Norouzadeh, and Ms. Salek. Dr. Golestani was absent with prior notice. The session began with Ms. Salek presenting a report on the institute’s activities over the past three months:
- With the continuous efforts of the institute, about 100 patients with primary immunodeficiency were vaccinated against COVID-19 in four phases. Of these, 60 patients were vaccinated at Children’s Medical Center, 27 at Rasoul Akram Hospital, and 13 in their local cities.
- Given that some patients requested a third dose of the vaccine, it was agreed that antibody tests would be conducted under the supervision of Dr. Norouzadeh. If results indicate a need for a booster, the institute will coordinate with the Ministry of Health for the third dose.
- For the renewal of the Ministry of Interior’s license, completed forms from the General Assembly were submitted. After signing and completing the paperwork, the documents were sent to the Registration Organization and are currently being followed up.
- Following previous correspondences regarding the lack of Berinert for hereditary angioedema (HAE) patients (notably letter #13723/665 dated August 14, 2021), the Ministry of Health issued an urgent import order. The company Atlas Gene promised to import the medicine within two months.
- With the help of donors, the institute arranged for CGD and MSMD patients to receive Gamma-Interferon free of charge by covering the co-payment cost.
- The institute’s website was updated in August 2021 with improvements for better performance.
- Five educational webinars were held for patients and their families:
- July 15, 2021: Overview of PID (definition, symptoms, prevalence, diagnosis) by Dr. Rouzafzaei. Patient Mr. Ali Kuchak shared his inspiring story.
- August 5, 2021: Nutrition basics by Dr. Nahid Ariaian. Ms. Sediqeh Ramazani, a PID patient, shared her personal journey.
- August 12 & 26, 2021: Nutrition for PID patients, again led by Dr. Ariaian with Q&A sessions.
- September 2, 2021: Types, symptoms, diagnosis, and treatment of immunodeficiencies by Dr. Rouzafzaei with a 15-minute Q&A.
- Due to COVID-19, the institute enabled online medical consultations via imedfolder so patients could be virtually examined by allergy and immunology specialists.
- Considering the mental health challenges faced by chronically ill patients, the institute offered subsidized psychological counseling.
- Financial aid continued to be provided to patients based on submitted documents for medicine, tests, and hospitalization.
- The institute established contact with other charities such as Sepid (Tehran) and Sediqeh Tahereh (Esfahan) for coordinated patient support.
- A patient under the institute’s care needed a bone marrow transplant, with a foreign donor from Germany. The total cost was estimated at 1.5 billion Rials. Due to the family’s financial hardship, the institute launched a fundraising campaign for Sama on August 26, 2021, raising about 330 million Rials.
- Dr. Norouzadeh presented the institute’s financial report and explained the antibody testing protocol.
Resolutions:
- To improve outreach, a three-year performance report will be compiled and published as a brochure.
- A protocol will be developed to standardize the institute’s assistance to transplant patients.
- Board members and trustees are to submit suggestions for future programs in the group chat so decisions can be made in the next board meeting.
The meeting concluded at 10:30 AM.
