Dr Aabha Nagral and Dr Sanjay Nagral visited Pakistan from their home city of Mumbai for the first time in December, although the couple’s association with the country goes back many years.

While Dr Sanjay Nagral is head of the department of surgery at KB Bhabha Municipal General Hospital in Mumbai, Dr Aabha Nagral is the honorary hepatologist and coordinator in the department of gastroenterology at Jaslok Hospital. They had been invited to speak at a major international medical conference in Karachi.

The "Free with Dignity” conference marked 40 years of the Sindh Institute for Urology and Transplantation, which provides quality medical care free of cost to all patients. The man behind the institute is Dr Adibul Hasan Rizvi, one of Pakistan’s quiet heroes and winner of the 1998 Magsaysay award.

In an essay written after his Pakistan visit, Dr Sanjay Nagral recalled his first meeting with Dr Rizvi in London in 1996, where they shared a concern about the state of healthcare in South Asia. “We would wonder whether liver transplantation would ever be available for the average citizen in the subcontinent,” he wrote.

Attended by a few other Indian doctors besides the Nagrals, the SIUT conference in Karachi coincided with the Heart of Asia ministerial conference in Islamabad, at which India’s External Affairs Minister Sushma Swaraj was present.

“I have come with the message that ties between the two countries should be good and move forward,” Swaraj said on arrival in Islamabad.

Away from the media glare, another story was unfolding, one which showed how Indians and Pakistanis can warmly interact with each other when given the opportunity.

Rare disease

On their trip to Karachi, the Nagrals ensured they met a young patient who had been under Dr Aabha Nagral's care over the past year.

The girl, 15-year old Saba Ahmed, has Wilson’s disease – a rare genetic metabolic disorder that leads to a harmful build-up of copper in vital organs such as the liver and brain. If left untreated or improperly treated,the disease can lead to loss of eyesight, speech, liver failure or acute brain damage, and in severe cases, death.

Ahmed traveled to Mumbai for treatment twice last year, first in April when she stayed for a month, and then again in August. Her story generated much media attention and goodwill between the two countries, with donors from Mumbai raising Rs 20 lakh for Ahmed’s treatment.

“We are thankful to Aman ki Asha [a peace initiative by media organisations in India and Pakistan], which helped Saba’s appeal to reach out to Indian donors who collected the money after receiving my brother Shahid Pechuho’s Facebook message,” said Sanam Noor, Saba’s aunt.

The media “helped save Saba’s life”, she added. “We thought we had lost her.”

Saba Ahmed’s condition was initially misdiagnosed in Pakistan as a psychiatric problem – a common error while treating Wilson’s disease patients. Doctors in Pakistan are still largely unfamiliar with this rare condition that affects one in around 30,000-40,000 people in countries where it has been studied. Pakistan is not one of them.

When Dr Aabha Nagral first saw Ahmed, the teenager couldn’t walk, speak or swallow. A reputable neurologist in Karachi was sceptical that her condition would improve.

But Ahmed’s aunt Sanam Noor felt that all was not lost. She had seen another nephew, Ather Ali, also a Wilson’s disease patient, dramatically improve under Dr Aabha Nagral’s care after she took him to Mumbai for treatment in 2004. Dr Aabha Nagral also successfully treated Ather’s two younger sisters for the disease.

Mumbai offers hope

With Pakistan lacking specialised medical treatment for Wilson’s disease, India is a logical and economical option for such patients.

In 2015, the Indian High Commission in Islamabad issued more than 4,000 medical visas to Pakistanis, including around 2,000 patients and their attendants. The figures for the previous year were similar, said Balbir Singh, First Secretary, Press and Information in Islamabad.

Noor pushed Ahmed’s mother, Nadia, to take her daughter to Mumbai. Nadia didn’t have the money for the trip so others chipped in. A Pakistani doctor donated money for the airfare. Noor gave Nadia about 2 lakh Pakistani rupees and some Indian currency. “I told her, 'You just go and people in India will help you,'" recalled Noor. “And they did.”

While Indians donated the money needed for the girl’s treatment, doctors waived their fees.

Shabia Walia, an Indian who runs the non-profit organisation Bluebells Community that has raised the bulk of funds for Ahmed, is now trying to send money across for the girl’s treatment in Karachi, where her mother is struggling with the costs of her post-hospital treatment.

Walia is still trying to find a way around the restrictions on financial transactions between Pakistan and India – there is no way to legally transfer money between the two countries. In 2012, New Delhi and Islamabad agreed to allow two banks each from either side to set up branches across the border, but stymied by tensions, the agreement has yet to be implemented.

The financial burden is a common obstacle as not all patients can afford the costs, “even for India”, said Noor. She advocated coordinating homestays for needy patients and their families with welcoming residents in Mumbai.

Many challenges

The rarity of the disease makes matters more difficult, particularly for those like Ahmed who have adverse reactions to the commonly prescribed drug D-Penicillamine, available in Pakistan as Vistamin. Its alternative, Trientine, is not registered or available in Pakistan or India.

Wilson’s Disease Association, a worldwide volunteer organisation, sends medicines free of cost to patients. But Ahmed’s family had to obtain a no objection certificate from the Pakistan Drugs Authority to import Trientine. While the association eventually sent the drug, the quantity restrictions mentioned in the NOC meant the supply was only sufficient for about three months.

Obtaining a visa for India and getting a passport are also difficult, particularly for patients who are unable to move in the first phase of the disease, points out Noor.

Aware that there are others like Ahmed who need support, Dr Aabha Nagral asked Noor to set up meetings for her with Wilson’s disease patients in Karachi.

On December 11, she met with 13 patients and their families, including six who travelled from outside Karachi. At a three-hour long meeting in the pediatric ward at SIUT, Noor introduced her niece to the patients and their families, who applauded Ahmed’s courage and improved health. Dr Aabha Nagral also later met with five other families at her hotel.

At these free consultations, Dr Aabha Nagral explained the disease to the patients and their families, and courses of treatment such as physiotherapy and speech therapy and best practices.

There is currently a lack of awareness of the disease, particularly about the seriousness and lifelong nature of the condition. “Patients or their families often discontinue medication after finding some improvement in health,” said Noor.

Runs in the family

Another aspect of Wilson’s disease that is largely ignored is its genetic nature. Doctors in Mumbai explained to Noor that marriage between cousins increases chances of the gene passing on. In her extended family, marriages are typically arranged with relatives. But with increased awareness, this is slowly changing.

Ahmed’s younger brother, who tested positive for the gene, does not have the disease. “We will make sure he doesn’t marry within the family,” said Noor.

Noor, who is now listed as a Wilson’s disease support contact in Pakistan on the association's website, first got acquainted with the ailment in 2004, when her brother’s son, Ather Ali, was diagnosed with it. Aged 14 then, he was initially given psychiatric treatment for hallucinations.

A psychiatrist at a posh private hospital in south Karachi sedated Ali and tied him up overnight. By morning, the boy had collapsed and lost his voice from screaming. The psychiatrist’s next recommendation was to take him to a spiritual healer.

A shocked Noor tried to intervene, but her brother ended up taking Ali to a shrine in Balochistan. After hearing that the “healer” had beaten Ali to make him confess that he was possessed, Noor picked up her nephew from their family home and took him to the reputed psychiatrist Dr Haroon Ahmed, who diagnosed the boy with Wilson’s disease. At that point, like his younger cousin Ahmed 11 years later, he couldn’t speak, swallow or stand. It seemed unlikely he would ever lead a normal life.

Noor, who had visited India earlier that year for the first time for a conference in Delhi, then took Ather to Mumbai, where Dr Aabha Nagral began supervising his treatment and helped him recover.

Dr DP Pandey, another doctor at Jaslok Hospital, stressed the importance of getting all Ali’s siblings and first cousins tested for Wilson’s disease. However, only Ali’s parents took this advice seriously. The other first cousins, including Ahmed, were not tested.

Ali’s younger sisters Palwasha, then aged eight, and Komal, six, tested positive. As a result of the early diagnosis, they did not have to suffer a similar ordeal to their brother.

While Ali was married last year, Palwasha has joined college and Komal expects to follow suit next year.

Had Ahmed been tested at the same time as Palwasha and Komal, she would not have suffered as much. While fortunate to have recovered to a great extent thanks to proper treatment, she still has to continue with medication, physiotherapy and other post-hospital care. She recently underwent an operation in Karachi to remove the abdomen pack that was inserted in India to feed her. She will travel to India again in the summer of 2016 for further treatment.

On December 25, the day after Dr Sanjay Nagral’s essay was published, Prime Minister Narendra Modi spontaneously visited his counterpart in Pakistan. The visit raised hopes that relations between India and Pakistan are on the path to normalcy. Irrespective of the outcome, doctors such as Adibul Hasan Rizvi and the Nagrals and families of patients like Saba Ahmed and countless others have already built cross-border relations that no visa restrictions, or militant attacks, can destroy.