Tuesday, March 10, 2020

Aziz Memon’s initiatives boosting Suriname

By Abdul Qadir Qureshi
(Pakistan News & Features Services)

Suriname may be a small country in size, situated on the northeastern coast of South America, but the proactive approach of Aziz Memon, their Honorary Consul General in Karachi, makes it feel big in the diplomatic and trade circles of Pakistan. 

Aziz Memon, whose entrepreneurship and social sector engagements often hit headlines, also serves the cause of Suriname with his regular meetings with the Ambassadors and the High Commissioners of different countries. 

Most recently he had a meeting with the Ambassador of Belgium in Pakistan, Philippe Bronchain, in which matters of mutual interest were discussed. 

Working as the Honorary Consul General in Karachi, he could also be seen interacting with the business leaders at the offices of the Karachi Chamber of Commerce and Industry (KCCI) as well as the Federation of Pakistan Chambers of Commerce and Industry (FPCCI), urging them to invest in Suriname. 

Suriname, defined by vast swaths of tropical rain forest, offers attractive packages to the foreign investors in the most peaceful and serene environment. Its capital, Paramaribo, where palm gardens grow near Fort Zeelandia, a 17th-century trading post, is located on the Atlantic coast. The capital city is also home to Saint Peter and Paul Basilica, a towering wood cathedral consecrated in 1885.

AKU observes Rare Disease Day 2020

By Abdul Qadir Qureshi
(Pakistan News & Features Services)

The policymakers and stakeholders were unanimous in their plea to pay greater attention to the challenges posed by rare diseases in Pakistan as they shared their thoughts and vision in the conference to mark Rare Disease Day 2020 at the Aga Khan University (AKU), Karachi. 

It was noted that globally there are over 6,000 diseases classified as rare as they affected fewer than 1 in 2,000 people while in Pakistan, these diseases are not so rare because a major risk factor is prevalent: inter-family marriages which significantly raise the risk of their children suffering from genetic defects and disorders. 

Dr Bushra Afroze, associate professor at AKU and a clinical geneticist at the University’s teaching hospital, shared the story of a girl from a small town in Sindh, to explain how the health care system’s shortcomings were affecting those living with rare diseases. 

“The girl was eight when the unusual symptoms started to appear. She began to lose her hair, fall over while walking, be inattentive in class and face difficulties in writing. As her problems appeared to be neurological, she was taken to a neurologist and erroneously diagnosed with a non-treatable disorder, preventing her from receiving timely treatment. When she started to experience additional symptoms such as the tendency to repeat words, she was thought to be crazy, leading to more distress for her and her family,” it was narrated. 

“Thankfully, her parents continued to feel that something was wrong and to search for help. They were finally referred to one of the country’s few genetics specialists in Karachi to learn that their daughter has remethylation defect in vitamin B12, a serious metabolic disorder,” she revealed. 

Dr Bushra Afroze explained that providing quality care to children required high-quality system-wide changes that could address several constraints: a lack of awareness; shortage of facilities, expertise and institutions as well as the geographic and economic inequities that people with rare diseases face.
She quoted The Lancet Global Health Commission on High Quality Health Systems in the SDG Era 2018 report which stated that providing health services without guaranteeing a minimum level of quality as being ineffective, wasteful, and unethical. 

Currently, there is a range of gaps in the arrangements to provide quality care for patients suffering from rare diseases. Narrowing these gaps will require collaboration between stakeholders across the spheres of research, healthcare, academia and government. 

“Quality is not a given. Ensuring quality treatment for rare diseases will take vision, planning, investment, compassion, meticulous execution, and rigorous monitoring, from the national level to the smallest, remotest clinic,” she added. 

As a first step, the experts at the conference highlighted the importance of screening newborns for rare diseases. A simple blood test, compulsory in China, Canada, the US, as well many countries in Asia and Europe, can enable the prompt detection and treatment of such conditions. 

AKU’s Professor Ayesha Habib, chair of the conference, explained that tests that can screen for over 50 rare illnesses have been common in the developing world for over 50 years. In Pakistan less than 1 per cent of newborns are currently being screened for these diseases, since only a handful of private hospitals offer these services, and for a narrow range of just five rare diseases. 

She added that more hospitals need to offer screening for rare diseases and called on the government to consider how such services could be scaled up through the public health insurance measures being introduced under the government’s Ehsaas programme. 

The speakers at the conference also spoke of the role of researchers in the field. At present, there are no national level studies or surveys on the prevalence of rare diseases. While there are a small number of patient registries for specific rare diseases, they exist in silos within hospitals. 

Data sharing between hospitals would not only enhance the accuracy of information (since a single patient travels to multiple doctors and could be recorded more than once) but would also help form a roster of patients that would enable treatment options to be explored through clinical trials. Efforts by the federal health ministry are also needed to support and streamline registries, speakers added. 

Professor Ayesha Habib noted that academics, clinicians and researchers need to create partnerships that would intensify the development of knowledge and skills in the field. She also highlighted the importance of patient advocacy groups in facilitating research and in fostering synergies between stakeholders. 

“Collaboration enables everyone to benefit from each other’s strengths. The challenge posed by rare diseases requires us to make the most of our existing resources while developing national and international partnerships that can meet the complex needs of those living with rare diseases that are currently being neglected,” she remarked. 

The conference Reframe Rare in Pakistan: Breaking Silos and Bringing Synergies was preceded by two days of workshops that brought together genetic researchers, pathologists and child health specialists from public and private sector organizations across the country. 

Other speakers at the event included Professor Shahid Mahmood Baig, head of Human Molecular Genetics at the National Institute for Biotechnology and Genetic Engineering and Professor Giancarlo La Marca, president of the Italian Society for Newborn Screening and Metabolic Diseases.

Proposal for revamping Railways submitted

By Abdul Qadir Qureshi
(Pakistan News & Features Services)

A proposal has recently been submitted to Dr Ishrat Husain Sahib, Advisor to Prime Minister on Institutional Reforms, Government of Pakistan, for investment in Pakistan Railways through Public Private Partnership. 

In view of the deteriorating condition of Pakistan Railways and increasing trend of train accidents the Prime Minister of Pakistan, Imran Khan, had entrusted Dr Ishrat Hussain to devise and prepare a comprehensive restructuring plan to make the organization a profitable department through public-private partnership. 

Mir Mohammad Khaskheli, Member, FPCCI Standing Committee on Railways, has submitted a comprehensive paper in this regard, a copy of which was also obtained by PNFS. 

In what has been described as an essential policy paper, it appears to be precisely well timed and could be extremely useful for future strategy of the government for the development of sustainable rail system in Pakistan. 

The paper gives an insight into the historical background besides critically analyzing the performance and financial aspect of Pakistan Railways. The gist of analysis and recommendations made in the paper are based on in-depth study of 39 years of public sector organizations and input of very senior officers of Pakistan Railways. 

As outlined in the paper, Pakistan Railways has been currently facing serious financial crisis due to circumstantial historic debt, exorbitant escalating fuel prices, pay and pension, inadequate running of freight trains, loss making passenger business, manufacturing and service units. 

In fact, the huge financial deficit had driven the Pakistan Railways to a fatal bankruptcy and government of Pakistan has been further burdened with an additional financial liability. 

It has been noted in the paper that the persistent losses incurred incur didn’t arise entirely from any public service function but gross mismanagement, incompetence and political interference also contributed significantly in mounting financial losses and escalating debt. 

The paper has pointed out that Pakistan Railways has been unable to rise up to the public’s expectations in terms of desired quality standards and efficiency of service, having failed to develop an entrepreneurial culture with respect to management, accountability for performance, assessing and reacting to the issues of tariff and fares when compared to other modes of transport, and in being innovative and capturing new opportunities. 

Mir Mohammad Khaskheli, well versed with the organization’s functions because of his long stint there, reckoned that Pakistan Railways’ ability to transform itself from non-profit making agency of government to a profitable entity depended mainly on its capacity to respond effectively to important structural challenges and the transformation required among other things, a basic change in the driving policy of rail infrastructure and operation. 

“Its adoption of public and private sector partnership, customer driven, commercially viable and market oriented system to make this national organization to function on sustainable and financially viable footings to maintain sustained economic growth,” he wrote. 

He regretted that despite of tall claims of improvement in the performance of department by the top management more than 100 train accidents occurred during the year 2019 alone.

“Huge investment is required for the development in rail infrastructure and safety of train operation. This requires complete replacement of existing obsolete signalling and communication system, rehabilitation of old aged bridges, up-gradation and standardization of railway track & rolling stock and invigorating maintenance facilities in major shops/sheds and depots,” he suggested. 

“It seems difficult to revive the past glory of Pakistan Railways and bringing trains back on tracks in the present circumstances. The situation may not change until unless a high powered honest and dedicated team is entrusted with the task to undertake important structural changes that should make the best use of its assets efficiently and wisely to revitalize this largest vital public sector organization,” he added. 

“The Government of Pakistan may invite and offer the private sector for the development of railway’s core functions to put the organization on commercially viable footings through public-private partnership,” Mir Mohammad Khaskheli suggested. 

“The objective to revive Pakistan Railways under the CPEC-related projects is praiseworthy; yet they can only scratch the surface of the dismal situation of PR which needs both institutional reforms and instrumental investments. On the institutional side one change that should take place is the broader representation in the Railway Board in existence since 1959 and reconstituted in 2015 for more informal decision making,” he continued. 

“In addition to the representatives from Ministry of Railways, Communication and Finance; representation from Ministry of Economic Affairs & Statistics, Law & Justice, Planning & Development and FBR is very vital to obtain more significant input and guidance on bilateral, multilateral and technical partnership issues,” he concluded.