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24th Executive Committee Meeting

Thalassaemia Federation of Pakistan conducted its 24th Executive Committee Meeting at Hotel Grand Mirpur on Saturday, 14th may 2016.

The meeting was chaired by Dr. Sarfaraz Jaffery, Vice President, Thalassaemia Federation of Pakistan.

The Minutes of the Meeting are as follows:

                                    Minutes of the 24th Executive Committee Meeting

Thalassaemia Federation of Pakistan

Saturday 14th of May 2016

Regency Hotel, Mirpur AJK

 

The 24th Executive Committee meeting of Thalassaemia Federation of Pakistan was held at Regency Hotel Mirpur on Saturday, 14th of May 2016.

 

The Meeting was chaired by Dr. Sarfaraz Jafri, Vice President Thalassaemia Federation of Pakistan and was participated by the following.

Present:

  1. Sarfaraz Jaffery, Vice President Thalassaemia Federation of Pakistan
  2. Prof, Dr. Yasmin Raashid, General Secretary, Thalassaemia Federation of Pakistan.
  3. Prof, Dr. Nadeem Samad, Finance Secretary, Thalassaemia Federation of Pakistan
  4. Younus Hussain, Executive Member, Thalassaemia Federation of Pakistan
  5. Abdul Musavir Tareen, Executive Member, Thalassaemia Federation of Pakistan
  6. Mian Atiq Ur Rehman, Executive Member, Thalassaemia Federation of Pakistan
  7. Rehman Ali Sahil, Executive Member, Thalassaemia Federation of Pakistan
  8. M. Fayyaz, Executive Member, Thalassaemia Federation of Pakistan
  9. Rumaisa Noor, Executive Member, Thalassaemia Federation of Pakistan
  10. Gen (R) Suhaib Ahmed, Executive Member, Thalassaemia Federation of Pakistan
  11. Zafar Iqbal, Executive Member, Thalassaemia Federation of Pakistan
  12. Zakir Hussain, Executive Member, Thalassaemia Federation of Pakistan
  13. Muhammad Iqbal, Executive Member, Thalassaemia Federation of Pakistan
  14. Waqar Nasir, Executive Member, Thalassaemia Federation of Pakistan
  15. Hussain Jafri, Executive Member, Thalassaemia Federation of Pakistan

Observer

Dr. Muhammad Adil Akhtar

Regrets:

  1. Gen (R) Moin Uddin Haider, President, Thalassaemia Federation of Pakistan
  2. Haroon Memon, Executive Member, Thalassaemia Federation of Pakistan
  3. Muhammad Usman, Executive Member, Thalassaemia Federation of Pakistan
  4. Ihsan Ul Haq, Executive Member, Thalassaemia Federation of Pakistan
  5. Fakhar Zaman, Executive Member, Thalassaemia Federation of Pakistan
  6. Yaseen Khan, Executive Member, Thalassaemia Federation of Pakistan
  1. Tilawat

The meeting started with recitation of the Holy Verses by Dr. Nadeem Samad.

After the recitation, Dr. Yasmin Raashid, General Secretary TFP told the house that due to health issues, the doctors advised  General Moin not to travel. The President TFP has insisted that the meeting should go ahead as planned.

The meeting was chaired by Dr. Sarfraz Jaffery, Vice President, TFP

  1. Minutes of the Last Meeting

Minutes of the (23rd) Executive Committee meeting were presented to the house by TFP General Secretary, Prof, Dr. Yasmin Raashid, which were unanimously approved by the house.

  1. General Secretary report

The next item on the agenda was General Secretary’s report. Prof, Dr. Yasmin Raashid, General Secretary TFP presented the report. The house appreciated the activities of TFP and approved the report unanimously.

  1. Finance Secretary Report

The next item on the agenda was the Finance Secretary’s report. TFP Finance Secretary, Prof, Dr. Nadeem Samad presented the Financial and Audit reports which were also unanimously approved by the house.

  1. 11th National Thalassaemia Conference and Workshops

A discussion was held regarding the 11th National Thalassaemia Conference & Workshops, to be held at Peshawar Khyber Pakhtunkhwa in December 2016. The venue for the conference was decided to be Khyber Medical College Peshawar as it would save the cost of organizing the conference in a hotel. It was decided to organize the conference in the first week of December 2016.

Mian Attique ur Rehman said that the Executive Committee members of TFP KPK have already held a meeting regarding  organizing of the conference and are committed to provide all the required assistance and support for the conference. He requested that TFP should try to get a high ranking official like CM, Governor, Minister of Health or a person of national stature to be the Chief Guest at the Conference inauguration ceremony.

Dr. Yasmin Raashid  said that she would request to Mr. Sharam Khan Taraqi, the KPK provincial Minster of Health to facilitate in organizing of the conference. She requested Mian Attique  and other Executive Committee members from KPK to raise at least five lacs for the conference. It was also decided that letters will be written to all pharmaceuticals for sponsorship of the Peshawar Conference.

  1. Calendar of Events

A discussion was held regarding the calendar of events. Dr. Yasmin Raashid said that as decided earlier, every TFP provincial chapter should conduct at least two workshops annually.

Dr. Sarfaraz Jafri told the house that that the Sindh chapter has scheduled workshops at Hyderababd and Nawabshah in July 2016.

Dr. Yasmin Raashid requested Dr. Nadeem Samad to organize a workshop at Quetta for Balochistan. Dr. Nadeem Samad agreed to organize a workshop in the summers of 2016.

Dr. Yasmin Raashid said that every province should share information regarding workshops and other events so that  TFP can coordinate  to ensure uniformity and quality.

  1. TIF’s Visit

Dr. Yasmin Raashid informed the house that TIF delegation comprising of Dr. Michael Angastiniotis and Mr. Stavros Melides visited Pakistan in March 2016 and met with Chairman Bailulmal. This meeting with Chairman Bailulmal was organized by Novartis Pharmaceuticals. TFP was not taken on board by the TIF as we were just informed that they TIF will be coming to Pakistan in the near future. Moreover, the TIF delegation also attended the National Thalassaemia Policy workshops held in Islamabad. The house discussed this issue and requested TFP office to write to TIF to work in Pakistan only through TFP. Dr. Yasmin said that this has already been discussed with TIF several times and they always agree with this, however, on this visit TFP was not collaborated with.

  1. Fundraising

Dr Yasmin Raashid informed the house that Rs. 200,000 for the Mirpur workshop was sponsored by Sundas Foundation through the courtesy of Mr. Yasin Khan.  The house appreciated Sundas Foundation for their kind sponsorship. Dr. Yasmin Raashid also requested the Executive Committee members for raising money for the TFP.

  1. National Thalassaemia Policy

A discussion was held regarding the establishment of National Thalassaemia policy. Dr. Yasmin Raashid informed the house that following two initiatives have been taken:

  1. The first initiative had been through Safe Blood Transfusion Program (SBTP) which organized workshops in Lahore, Karachi and Islamabad in the month of March 2016 to formulate a National Thalassaemia policy. TFP was invited to Lahore and Karachi workshops, however at the final culminating workshop in Islamabad, TFP was not invited. We came to know through someone that although TFP has not been invited, a member of TFP has been asked to make a presentation on TFP without federation’s information and permission.

Dr. Yasmin further said that on getting this information, she contacted Dr. Hassan Abbas Zaheer, National Coordinator, SBTP and protested that TFP is the major stakeholder in Thalassaemia and therefore, cannot be bypassed regarding development of a National Thalassaemia Policy. She said that after this, I made sure to attended the workshop at Islamabad and present on TFP. Moreover, I told SBTP that TFP is the most important stakeholder in Thalassaemia as it compromise of Thalassaemics, their families, NGO working on Thalassaemia and doctors treating Thalassaemics. Therefore, TFP is the best platform for such an initiative and it should not be ignored as otherwise any policy without TFP’s input may not work.

Maj Gen. (R) Dr. Suhaib Ahmed said that SBTP  works on blood transfusions, but why are they trying to get into Thalassaemia, which is much broader area. Dr. Sarfaraz Jafri said that ” I told Dr.  Hassan Abbas Zaheer to not to try to supersede Thalassaemia Federation of Pakistan in the formulation of National policy. He said that Hassan Abbas promised that he would keep TFP onboard o this initiative. Moreover, Dr. Sarfaraz Jafri also proposed that SBTP  should be an associate member of TFP on the condition that they work closely with TFP . Moreover, Dr. Sarfaraz Jafri said that a letter should be sent to the Federal government that it should work closely with TFP for the formulation of national policy.

The house also decided that no TFP member or official could represent TFP without prior information and permission of the federation.

  1. The second initiative was by Novartis Pharmaceutical. Dr. Hussain Jafri attended the meeting on behalf of TFP. The meeting was mainly attended by the doctors running Thalassaemia centers at public sector hospital. The two doctors that facilitated the meeting are members of TFP Medical Advisory Board. It was astonishing to see doctors present in the meeting were quite anti TFP. These doctors claimed that they were providing excellent services in their centers whereas, TFP societies were providing very bad treatment services to Thalassaemics. However, on one had they were critical of TFP, yet they also wanted to become members of TFP and were very unhappy that they were not made members of TFP. Dr. Hussain Jafri replied to this criticism and said that TFP societies were managing the bulk of work on management of Thalassaemia in Pakistan and doing their best to provide best possible services. He inquired if any public sector center present in the meeting could claim that they were providing excellent treatment services to Thalassaemics? There was no response to this question from the participants. Dr. Hussain also informed the participants that doctors and public sector Thalassaemia centers could become associate members of TFP.

A discussion was held on this issue that what does Novartis know about devising a National Thalassaemia Policy. Where was Novartis and these public sector doctors when Thalassaemics were dying due to non-availability of medicine and due to inadequate buying power. It was questioned that if TFP societies were not effective entities, how has the  average life span of Thalassaemics increased and how are Thalassaemics becoming adults getting married and perusing careers.

It was also highlighted that Novartis invited TIF to meet Chairman Baitulmaal so that Baitulmaal purchases their drugs. Although TIF denied that they were invited by Novartis, they went and met Chairman Baitulmaal with Novartis representatives.

Muhammad Iqbal said that TFP should offer Chairman Baitulmaal, to become an associate member of TFP.

  1. Thalassaemia Treatment Guidelines

Dr. Yasmin said that the MAB has been given the responsibility to develop Thalassaemia Treatment Guidelines, which could be followed by Thalassaemia centers across Pakistan. She said that due to the combined efforts of TFP members, Thalassaemics are living longer and having productive lives. It is time that TFP revises the protocols/guidelines on treatment, management and prevention and also include adult Thalassaemics into them. Dr. Yasmin requested Dr. Adil Akhter to provide an update on the development of these guidelines.

Dr. Adil Akhtar said that eight doctors from all over the country were given different topics to help develop specific guidelines, however, so far only three doctors namely Dr. Joveria Mannan, Dr. Adil Akhtar and Dr. Sarfaraz Jaffery have given in their drafts, no others have done the same. We are following up on this and will get back to the Executive Committee as soon as we have these ready to share.

The house discussed the importance of having such guidelines so that quality of care is provided to Thalassaemics through all Thalassaemia centers in the country. The house also decided to develop different tiers and rank of Thalassaemia centers according to the range of services provided by them.

Dr. Adil Akhtar said that the second edition of Iron Chelation guidelines were almost ready and will be not only be uploaded on TFP website but will also be printed and circulated to all the Thalassaemia centers. The house appreciated the hard work of MAB for developing the second edition of Iron Chelation guidelines.

  1. Any Other Business
  2. Hydroxyurea:   Atiq Ur Rehman said that it has been discussed many time before that Hydroxyurea has been wrongly promoted by some people as the miracle drug for Thalassaemia due to which patients are suffering. It was decided to request MAB to develop very brief information on Hydroxyurea and put it on TFP website so that all stakeholders get information on the use of this drug in Thalassaemia.
  3. Registration of new Births: General Suhaib said that it is important to register the births of new Thalassaemics so that the planning regarding treatment and prevention services could be done accordingly. He said that I have made an online database to register new births, which could be used by Thalassaemia center. Yasmin Raashid said that all the TFP members will be requested to use this website for online registration of Thalassaemics.
  4. Thalassaemics’ issues: Ms. Rumaisa Noor, Thalassaemic representative highlighted that the majority of Thalassaemia centers were not using treatment guidelines developed by TFP. Moreover, blood storage and infection control are also a problem and need improvement. Furthermore, she said people are reluctant to donate blood due to which Thalassaemics suffer. Dr. Yasmin Raashid said that we are bad blood donors and especially in month of Ramadan, no one is ready to donate blood. She said that all societies should run special awareness campaigns on blood donation.
  5. Employment for Thalassaemics: The General Secretary said that the TFP provincial chapters should work towards getting employment for Thalassaemics as they are getting educated and finding difficulties in getting jobs. Moreover, Dr. Yasmin said that TFP members should provide computers skills to Thalassaemics so that it is easier for them to get jobs. Mr. Muhammad Iqbal said that Kashif Iqbal Thalassaemia Trust has signed an MOU with Mcdonalds to employ Thalassaemics and so far nine Thalassaemics have already been employed at Mcdonalds. Dr. Yasmin Raashid said that a Thalassaemic fellow of Thalassaemia Society of Pakistan is also working as an Associate Producer at Dunya TV and a Thalassaemic girl is working at her clinic on part-time basis.
  6. Letters to PPP: Dr. Sarfaraz Jafri asked to get a copy of the letters sent to the Pakistan People’s Party to ensure that it adheres to proper standards of Blood collection and storage during their blood collection campaign(s). He said that this matter must be pursued to ensure that proper standards are strictly followed. Dr. Yasmin Raashid said that a copy of the letter will be sent to Dr. Sarfaraz Jafri to pursue the matter further with the Pakistan People’s Party.
  7. Benazir Income Support Program: Mr. Muhammad Iqbal said that TFP should write a letter to Marvi Memon to collaborate with TFP and enroll Thalassaemics for Benazir Income Support Program.

At the end of the meeting, Dr. Yasmin Raashid informed the house that Dr. Zafar Iqbal has worked very hard to organize the workshop and Executive committee meeting at Mirpur for which TFP is extremely grateful to him. The house appreciated and thanked Dr. Zafar Iqbal was all of this hard work and excellent hospitality extended to the Executive Committee members and participants of the workshop.

With no further matters to discuss, the meeting was adjourned by the Chair.