The Fifteenth Board of Directors Meeting

The meeting was held on Monday, January 25, 2021, from 8:30 to 10:00 AM, at the conference hall of the Immunology, Asthma, and Allergy Research Center, with the attendance of Dr. Moein, Dr. Mohebi, Dr. Fazlollahi, Dr. Golestani, Dr. Shah Mohammadi, Dr. Norouzadeh, and Ms. Salek.
The meeting began with a report by Ms. Salek on the institute’s activities during the past three months.

1. Start of Work by the Association’s Social Worker (Ms. Rashidi) One Day per Week with the Following Duties:
   • Assessing and evaluating the financial situation of patients supported by the association
   • Possibility of conducting home visits
   • Establishing a framework for providing aid and prioritizing patients based on their economic status
   • Providing practical support to patients (or decision-making on their behalf when needed)
   • Offering social work counseling to patients
   • Coordinating with other charities to secure accommodation in Tehran during treatment, as well as financial and educational support
   • Participating in team meetings
   • Documenting and writing reports
   • Visiting organizations, healthcare centers, and administrative offices, and submitting required documents when necessary
2. Holding Weekly Executive Task Force Meetings
   With the participation of Dr. Pourpak, Dr. Fazlollahi, Dr. Norizadeh, and Ms. Salek to make decisions on implementing the short-term strategic plan.
3. Launching the Association’s Virtual Clinic Named “Mahna Clinic”
   Hosted on the iMedFolder website to enable online consultations for immunodeficient patients during the COVID-19 pandemic, offering a 50% discount for these patients.
4. Preparation of a Financial Report on Estimated Costs for Immunodeficient Patients
   
   To be submitted to the Foreign Exchange Savings Fund Board of Trustees. The report was compiled based on existing data, including the number of patients, diagnostic costs, medication prices, and consumption in each immunodeficiency category. It was submitted on 1/10/1399 (Dec. 21, 2020), along with a separate letter requesting an in-person meeting with the head of the Board, Mr. Safavi. Unfortunately, despite numerous follow-ups, a meeting could not be arranged. Informally, the fund stated that only 180 million IRR of the Parliament-approved budget had been allocated, of which 90 million went toward cochlear implant equipment and the rest toward other rare diseases.
5. Multiple Meetings Between Association Representatives (Dr. Fazlollahi and Ms. Salek) and Dr. Aghighi (Director of Rare Diseases at the Ministry of Health)
   To discuss launching a patient registry system for primary immunodeficiency diseases within the Ministry of Health.
   Explanation:In September, association officials repeatedly visited the Ministry of Health to request influenza vaccines for immunodeficient patients but were told that these patients were not a priority. Additionally, inquiries to the Food and Drug Administration regarding shortages of IVIG revealed that reliable and adequate data on the number of immunodeficient patients and their medication usage were lacking.
   Consequently, during a meeting with Dr. Shadnoush and Dr. Aghighi, the association highlighted the issues faced by these patients. As a result, it was agreed that patients with primary immunodeficiencies would be registered in the Ministry’s rare disease system. This registry would allow for electronic medication prescriptions, vaccine allocation (COVID-19 and influenza), and provision of health service support packages.Over the past three months, necessary data for launching the registry were collected and submitted to the system designer. These included:
   • A list of types of primary immunodeficiency diseases
   • A list of medications used by patients
   • A list of board-certified allergists and clinical immunologists along with their medical license numbers
   • A template for physician referral letters

   Thankfully, the patient registry system was launched on Saturday, January 23, 2021 (5 Bahman 1399). Patients are now gradually registering through the Rare Disease Department of their local university health offices, using referral letters from allergy and clinical immunology specialists.

6. Signing a Memorandum of Understanding (MoU) with the Ethics Association and Charities Dar Al-Akram and Aba SalehAccording to the MoU with the Ethics Association, the following points were agreed upon:a. Collaboration to provide short-term training courses and workshops needed by both parties
   b. Cooperation regarding seminars, conferences, and scientific roundtables
   c. Sharing information about classes, lectures, and seminars of both parties via their websites
   d. Collaboration in publishing scientific and research articles
   e. Free distribution of the Immunodeficiency Patients Advocacy Association’s publications to the Ethics Association
   f. If possible, cooperation in providing suitable venues and spaces for holding Ethics Association eventsAdditionally, representatives of the association (Dr. Nouri Zadeh and Ms. Salek) held a meeting on 20/10/99 (January 9, 2021) with the CEO of Dar Al-Akram Charity (Mr. Mirahmadi) and the Public Relations Manager (Mr. Ebrahim Khani). They discussed cooperation between the association and Dar Al-Akram charity. Considering some students under the association’s support need educational assistance, Ms. Salek was appointed as a trusted liaison for Dar Al-Akram, and it was agreed that needy students would be referred to Dar Al-Akram through her.

   Furthermore, negotiations were held with the CEO of Aba Saleh Charity (Mr. Haj Agha Mohammadi) regarding the introduction of needy individuals for livelihood assistance. He agreed to support those referred by the association.

7. Regarding the Significant Price Increase of Gamma Interferon in Azar Month (November-December)Initially, this price hike was not covered by insurance. The association made extensive follow-ups with the Food and Drug Administration, resulting in Gamma Interferon eventually being covered by insurance. However, due to the price increase, the patient’s 10% share now amounts to approximately 3,200,000 IRR for a one-month treatment course (12 ampoules), which is financially difficult for patients to pay. Therefore, the association signed an agreement with the Gamma Interferon manufacturer, in which the company, with support from donors, pays the patients’ share to the association, and the association then transfers this amount to the patients’ accounts.It is worth mentioning that the association plans to organize a scientific webinar, in cooperation with the manufacturer, on CGD patients and the use of Gamma Interferon in their treatment.
8. Providing Financial Aid for the Treatment of Immunodeficient Patients
9. Communication Channels
   Over the past three months, the Immunodeficiency Patients channel, the Hereditary Angioedema Patients channel, and the association’s Instagram page have been active, focusing on COVID-19 prevention, education, and informing patients about various types of immunodeficiency diseases.
10. Financial Report
    At the end, Dr. Nouri Zadeh (the association’s treasurer) presented a brief report on the financial status of the association.

1. Regarding Dr. Shah Mohammadi’s remarks about the IVIG drug, which has recently been produced in Iran and is being administered to patients free of charge, it was decided to conduct further investigation on this matter. Dr. Shokri, who is apparently familiar with this plan, will present a report at the Allergy and Asthma Association’s board meeting.
2. Given the urgent need of patients with hereditary angioedema for the drug Berinert, it was decided that the institute will take action to approve the import license for the drug by the Food and Drug Administration and to have the drug covered by the Supreme Insurance Council.
3. It was also decided that the Allergy and Asthma Association will send letters to the heads of universities across the country to inform them about the Immunodeficiency Patient Registration System.
4. An informational letter about the Immunodeficiency Patient Registration System will be posted on the Clinical Allergy and Immunology Physicians Association channel.
5. Finally, ways to attract financial resources were discussed and reviewed.