It has been two years since teenage Mahnaz left her college. Like the waves of the sea surrounding her little harbor community of Sur Bunden, her story is one of leaving her dreams behind and beginning a fight for life. Not for herself but for her motherless younger siblings who are victims of the fatal disease of Thalassemia.
Nineteen year old Mahnaz is among the very few girls of her age in her community of Sur Buden who could complete high school education. It was neither the cultural barrier nor the lack of educational institutions that stopped her from transforming her dreams into realities, she says. Rather, it was the lack of healthcare facilities within the port city of Gwadar and its nearby areas that became the reason for the death of her mother and four siblings.
Within the impoverished province of Balochistan, Gwadar is well known for its strategic port at one hand and on the other, for lack of most of the basic facilities related to health, among other things. According to PAIMAN, a local nonprofit organization, in 2009 district Gwadar had a population of 185, 498.
This population is served by only one district headquarter (DHQ) hospital where only 4 of the 28 employed doctors are usually on duty. According to the locals, the working hours of the hospital are 8:00 am to 2:00 pm but few doctors on duty usually arrive at 11:00 am and shortly leave at 1:00 pm.
Mahnaz’s mother suffered from Thalassemia. Elaborating on the lack of facilities, Mahnaz says “Due to the lack of operation facilities and the absence of doctors, my mother had to endure severe pain and was taken to Karachi but before we could reach the hospital, she stopped breathing and I couldn’t do anything to save her.”
Her mother left behind nine children and Mahnaz as the oldest among all. Being the eldest, she has to take care of the younger ones. She says that she has already lost three of her brothers and a sister also to the fatal disease of Thalassemia. And she has another two sisters with the same condition.
Eleven year old Adil is another victim of Thalassemia from Gwadar who visits hospital every month with his father. With his pale, innocent face, he says “I want to play and go to school with my friends but my parents are too scared to send me anywhere far from them. May be I don’t have many more days to live.”
Both Mahnaz and Adil thank “Hope Foundation” a community based organization in Gwadar that had been helping victims of Thalassemia since 2009. Unexpected yet active, Hope Foundation has more than 150 members who donate funds yearly and have been fighting against the disease that so far has killed not only Mahnaz’s siblings and Adil’s dreams but thousands of innocents during the past few decades.
While the government continues to ignore the health sector of the port city, there are a few dynamic and self-driven individuals who have taken worthy initiatives on their own.
“Younis Hussain, the key founder of the organization, together with several youth merged ideas to originate and run an organization that made life possible for the patients of Thalassemia. This seemed almost impossible in a place like Gwadar that doesn’t even have doctors for minor health issues but they achieved this impossible” a blood donor told Pak Voices.
According to the organization there are 105 registered patients in Gwadar that come on regular basis for blood transfusion. Along with them, there are a number of patients who refuse to transfuse blood due to non-medical beliefs and myths.
Many believe that transfusing blood once would lead to life time dependency and by not doing so, the body of the victim would itself be able to make blood. Hence even after knowing about the disease, many patients choose not to come to the Hope foundation center. This ultimately increases the number of Thalassemia-related causalities every year.
During the past seven years the organization has registered around 40-45 causalities. “They (the people of Gwadar) need more awareness about this inherited disease” says a member of the foundation. In the audio clip below, Younis Hussain talks about the causes of Thalassemia and the problems faced by people of Gwadar in tackling the disease:
“We are fortunate to have 2200 volunteer blood donors every month” Younis Hussain, the lab technician at DHQ Gwadar and the founder of Hope foundation says. But he is concerned about the fact that preserving donated blood and storing the medicine in a cool place is almost impossible in the midst of the perennial electricity shortage. He says there is a dire need for electricity-storing UPS and stabilizers for the center.
“It won’t be less than a surprise for a visitor to know that our port city still lacks health care facilities compared to the metropolitan cities of the country”, says a Gwadar resident.
According to Dr. Fazal Khaliq, the Medical Superintendent of DHQ Gwadar, Thalassemia is not an epidemic disease like TB that can be eliminated but it is an inherited blood disorder that results in excessive destruction of red blood cells. He says that it might not be possible to reduce the cases of the disease but talking of Gwadar, the patients can be helped to lead a normal life by blood transfusion on regular basis through Hope foundation.
It may seem impossible to reduce the cases of this disease in Gwadar due to the lack of medical facilities. But according to Gretchen Holm writer of Health line medical website, “Thalassemia can be diagnosed and cured even before the birth of the child carrying the disease. “ In other words, an intervention at the earliest possible time may be helpful.
However a hospital that only has 4 doctors for only 2 to 3 hours a day, no medicines for the patients, only 42 beds that are not maintained well, no training facilities for nurses, lack of equipment, a frequent lack of X-Ray film; in such a hospital, expecting such treatments for Thalassemia patients is no more than a vain dream, says Younis Husain.
Barkatullah Baloch, the president of Gwadar Youth Forum, an active youth organization, is critical of the provincial government which has failed to improve the health facilities in Gwadar. He quotes the Health Minister of Balochistan, Rehmat Swaleh, who visited the hospital in February and stated “We understand all the issues of the hospital and we assure to send 5 doctors to DHQ Gwadar.’’
Baloch says that even after two and a half months, the five doctors that the health minister promised haven’t appeared at the hospital.
“Leaving out other minor health issues, government hasn’t yet provided any facilities to the Thalassemia victims. Many patients may have died had they decided to rely on the government’s promises. Apart from only letting the Hope foundation use a room in the district hospital and providing few equipments last month,” said Younis Hussain “the ministry of health hadn’t helped us with anything else in the past years.”
While organizations like Hope Foundation are fighting against Thalassemia, a number of other diseases, epidemic and inherited, require the notice of the Government. People of Gwadar are impatiently waiting for the day when all doctors and each type of medical facility is provided in the civil hospital they already have and in GDA (Gwadar Development Authority) hospital that is planned for future.
But again the new hospital of GDA ran into issues even before its inception. According to Gwadar Youth Forum, Memon Foundation is a medical firm from Karachi which offered to make the hospital fully functional. However the offer was not availed and now, political interference has made the hospital nonfunctional even though six months have lapsed since its complete establishment. The post of Chief Executive of the facility has been handed over to Dr. Noor, who is the brother of the Provincial President of the governing National Party, Dr. Yasin. Naturally, there are allegations of favoritism in medical appointments in Gwadar.
According to the locals, political interference had already been a great hindrance for the educational development of impoverished Balochistan and now the same political game is an obstruction in the improvement of the health sector.
Children like Mahnaz’s siblings and little Adil are precious lives which are significant not only for their family but also for Gwadar. They are a litmus-test for the government to prove that the common citizens have a stake in the future of the region. And that is only possible if appropriate facilities for diseases like Thalassemia are provided to the patients on an urgent basis.
Mahnaz urged, “I may have had my mother still with me if only we had operation facilities in Gwadar and my four siblings with me if we had something like Hope foundation before.”