Gwadar's Thalassemia Patients Survive With ‘Hope’

A Thalassemia patient in Gwadar Civil Hospital

A Thalassemia patient in Gwadar Civil Hospital. Used with Permission.

This story was originally written by Mariyam Suleman for PakVoices. It is being published on Global Voices as part of a content-sharing agreement.

It has been two years since Mahnaz was forced to leave college. Sea waves surround her little harbor community Sur Bunden, and remind her of the big dreams she left behind.

Her mother died from complications related to the genetic blood disorder Thalassemia.

Being the eldest, she had to take care of her nine younger siblings. Mahnaz says that she has already lost three her brothers and a sister to the fatal disease. She has another two sisters with the same condition.

Nineteen year-old Mahnaz is among the few girls her age in Sur Buden who could complete high school education. Cultural barriers and lack of educational institutions did not stop her from transforming her dreams into reality, she says.

It was the lack of healthcare facilities in and around the port city Gwadar, that forced her to abandon her dreams.

Within Pakistan's impoverished province of Balochistan, Gwadar is known for its billion-dollar strategic port, a potential gateway for 20 percent of the world’s oil. The port was created with funds mostly from China, for China. But its 249,055 residents lack basic health facilities.

This population is served by one government-run hospital, where only four 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 the few doctors on duty usually arrive at 11:00 am and leave at 1:00 pm. Gwadar also has about two dozen government-run health centers according to the non-profit Paiman.

A view of District Head Quarter Hospital Gwadar

A view of District Head Quarter Hospital Gwadar. Used with Permission.

Speaking about her mother's passing, 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.”

Eleven year-old Adil is another Thalassemia patient in Gwadar. He visits the 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.”

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 the impossible, a blood donor told Pak Voices.

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.

Blood donation camp organized by Hope Foundation

Blood donation camp organized by Hope Foundation. Used with Permission.

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 units and stabilizers for the center, government-enforced power outages are frequent in Pakistan.

“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.

Another Thallasemia patient in Civil Hospital, Gwadar

Another Thallasemia patient in Civil Hospital, Gwadar. Used with Permission.

It may seem impossible to reduce the cases of this disease in Gwadar due to the lack of medical facilities. According to Gretchen Holm writer of HealthLine 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 four doctors for only 2-3 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 (we'll) 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. The founder of Hope Foundation says:

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, 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.

Younis Hussain talks to PakVoices about ‘Hope Foundation’

Younis Hussain talks to PakVoices about ‘Hope Foundation’. Used with Permission.

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 locals, political interference has 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.”

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