Health-care reform: Waiting for the parents of our Libby Zions

Rumi Ahmed.

Published in the Independent on 10 October 2010.

This piece explores the role of private initiative to reform our health care system.

Libby Zion was 18 years old when she died at a famous New York City Hospital on March 5, 1984. Arriving with fever at the emergency room on the evening of March 4, she had fever, her body was shaking and emergency room doctors found her agitated. She was admitted to the hospital, and two trainee resident doctors on night duty took care of her. These trainee doctors were in touch with Libby’s main doctor via telephone. Over the course of the night, Libby continued to have high fever; she occasionally became more agitated and needed to be restrained (tied down to the bed). Early in the morning Libby’s heart stopped and she died suddenly. 

Libby’s father Sydney Zion, a former lawyer and a well known New York Times journalist, made it a crusade of his life to investigate the cause of his daughter’s death, punish those responsible, and fix the problem in the system.

Sydney Zion first started campaign among journalists; report after report started being published all over the United States, lawyers were hired to put the case on trial. A major legal battle was launched. After years of litigation, Jury, grand Jury hearing, investigations by multiple professional and government commissions, specific laws were enacted and enforced.

The new laws radically reformed patient care and physician training in hospitals in New York and other states. The reverberating effect still guides and affects the US medical training, with fewer work hour for trainee physicians and more supervision by the senior physicians. Libby Zion died at a very young age, but her father converted the sorrow into strength to force the most significant change in US hospitals and possibly saved the lives of many more Libby Zions.

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In 1955, when Pennsylvania resident Doris Tulcin’s one-year-old daughter was diagnosed with a disease called Cystic Fibrosis, there was no treatment for that disease. All children diagnosed with this disease used to die by their 5th birthday.

Tulcin’s maternal instincts, rather than devastating her, made her ferociously strong. She along with some other parents, whose children were also recently diagnosed with Cystic Fibrosis, immediately got to work with the hope of making possible a seemingly impossible task—find a cure for Cystic Fibrosis. The Cystic Fibrosis Foundation was born.

The Foundation now is world’s leading organization involved in medical care delivery, advocacy, research, and family support in Cystic Fibrosis. Within 50 years of its inception, the Foundation has played the most vital role in the development of all four therapies that are now a routine part of treatment of Cystic Fibrosis. In addition with the Foundation’s active support and direction, 30 more potential new therapeutics are in the pipeline of development. 

In 1989, the Foundation-supported scientists discovered the defective gene that causes Cystic Fibrosis—a monumental breakthrough on the road to a cure.

When the Foundation was established in 1955, Doris’s daughter was supposed to live 4 more years at most. Due in large part to the Foundation’s aggressive investments in innovative research and comprehensive care, the predicted median survival age for people with this disease is now near 40 years.

Doris Tulcin is still active with Cystic Fibrosis Foundation, so is her daughter, who lived much beyond 5 years she was expected to live.

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Let’s come to our neighborhood.

Numerous such stories exist in India where treatment of Autism, Cerebral Palsy and many other conditions flourished under the patronage of parent/patient run foundations.

Abdus Sattar Edhi started his social service with an old van that would run along dusty roads of Karachi to carry poor sick residents to hospitals and bury unclaimed dead bodies after a good bath and ritual. Starting with that small venture, Edhi foundation is the largest welfare organization in Pakistan.

In addition to their incredibly efficient and extensive ambulance service extending to every remote corner of Pakistan, Edhi foundation now contributes significantly to Pakistan’s national health-care especially maternity care for the poor, emergency medical services and shelter for abandoned children. Private owned Edhi ambulance service now rivals US/Europe’s 911/999/112 service lines. An Edhi ambulance is available with a phone call to 115 from many locations in Pakistan.

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All these stories underscore a point about the importance of our private citizens to take ownership of our health-care needs and the possibilities that come along with citizen-led initiatives. In the case of healthcare, with some glorious exceptions, our national psych is not yet about taking ownership and the challenge of thinking beyond a single patient. The predominant thought still circles around blaming the government and the doctors.

Every single victim of any disease would leave the country for medical treatment if the travel and treatment cost can be afforded.  When sometimes one or two try to stand up and tackle the challenge, they lack the guidance, knowledge or needed resources.

Yes, in our society there are many with the passion of Sydney Zion or Doris Tulcin. But unlike the west, simple passion would take one nowhere. In this part of the world, to be able to achieve something like Sydney Zion or Doris Tulcin did, we need resourceful, capable, connected and powerful people take ownership of the problem and work for it selflessly.

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We cannot think beyond making a hospital in our Upazilla or abusing political power in diverting government resources in our locality. For every single private initiative hospital being built to satisfy one’s passion, there is already a neglected government healthcare outlet in the same locality. Ironically, as a result of one’s passion to build a hospital, we are getting two inefficiently managed healthcare outlets in the same locality.

One has to understand the reality that the impact of a privately owned single rural healthcare outlet to overall healthcare of that locality is miniscule.

There are other groups who privately invest in healthcare out of economic necessity, in a for-profit mentality. Although the impact of this sort of investment may be significant to our economy, their contribution to national healthcare is very nominal, at best.

At this time we need powerful passionate people get involved in healthcare activism and resort to a different smarter sort of altruism.

Let’s look at an example. Every year thousands of children, young men and women die of asthma. All these deaths are preventable.  We need a patient or a parent who will devote his or her life like that of Doris Tulcin for the cause of asthma in Bangladesh. We need an asthma foundation run by patients, parents, social advocates, physicians, researchers. Rather than spending Take 1 million in building a hospital in a village, this foundation may supply asthma medicine or nebulizer machine to all Upazilla health centers, maintain respiratory care units, mechanical ventilators in Zilla level hospitals, establish asthma research facilities, work with physicians groups to formulate and disseminate national guidelines to treat asthma and fund asthma research in nation’s tertiary hospitals.

On the same token, to be able to accept private partnership our government healthcare infrastructure needs to be reformed. Everybody do not have to establish a big organization like Cystic Fibrosis Foundation, private citizen ownership can start with a simple task of sponsoring a bed to a more difficult task of setting up a specialized unit in a government hospital. And again this reform can be initiated by an aggrieved lawmaker.

Like Sydney Zion, we need an angry father or mother push for ground breaking new rules and regulations to safeguard patients’ rights in our hospitals or doctor’s chambers.

The current government talks about public private partnerships. Our health sector could be most suitable for public private partnerships with a non-profit intent. Rather than building equally ineffective parallel system, our private efforts should be utilized to enrich our public healthcare facilities.

Our back is stuck to the wall now. It is about time our society turns around and fixes the broken healthcare system.

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