World Cancer Day is another occasion to recall the interconnectedness of risks, which provide an opportunity to tackle the world’s biggest killer—Non-Communicable Diseases (NCDs), a collective name given to ‘four diseases’ linked by ‘four lifestyle’ and ‘four biological’ risk factors. These diseases are a massive drain on health and the economy—evident in 36 million deaths annually, and a projected loss of forty-seven trillion dollars over a 20-year period. The scale of this problem urged the United Nations General Assembly to convene in 2011 for the second time in the history of the world around a health-related cause. The outcome of the convening, a Political Declaration outlined key strategies needed to combat this challenge. But amidst the carefully weighed language of this UN norm is an out-of-the-box implication for the UN post-2015 landscape—a gradual shift from a disease-focused approach led by development partners to a partnership-based multi-stakeholder and multi-sectoral response, largely in domestic purview. There are already a number of stakeholders engaged in this effort. A look at my calendar for this month reminds me of how much is already underway and the imperatives it creates for a rallying point.
Last week, I represented the NCD Alliance—an umbrella coalition of four apex professional societies, with over 2,000 NGOs as members—at a session of the World Economic Forum’s 2013 Annual Meeting in Davos in a discussion around the Healthy Living Charter, which embodies WEF’s efforts to exploit public-private synergy for prevention-related goals around NCDs. The same week, the WHO’s Executive Board met in Geneva—on its agenda, amongst other issues, was the UN Political Declaration-mandated global monitoring framework for NCDs, a process now completed. Next week, WHO in Geneva will bring us together at the NCD group of experts’ informal consultation for discussions around another set of normative instruments, including the global action plan around NCD prevention, which needs to be finalized for adoption at the 66th World Health Assembly in May 2013. In addition, a group of experts is meeting in London this week for the launch of the 4th Lancet Series, a leading academics’ attempt to bring new evidence and approaches for NCDs in the public domain. The NCD Alliance is actively engaged in this effort, bringing along with it, the teamwork of professional associations and foundations around the world. I have the privilege of straddling public, civil society and academic worlds, and through engagement with these efforts, can appreciate the scale and depth of multi-stakeholder engagement in NCDs, already underway. These efforts are largely mutually reinforcing and enable stakeholders to leverage comparative advantage. Governments, businesses, civil society and academics around the world bring their unique strengths to the table, which is why a coordinating mechanism for NCDs based on the Secretary-General’s paper on ‘Options for strengthening and facilitating multi-sectoral action for the prevention and control of NCDs through effective partnerships’ is so hugely important at this stage.
I switch hats now to my role as the founder of Heartfile. In Pakistan, we were cognizant of the need for multi-stakeholder engagement and partnerships in NCDs as far back as 2003, which is when the National Action Plan on NCDs and Health Promotion in Pakistan was launched. Notwithstanding the glitches in its implementation, the plan itself does present a design and template for integrating NCDs and risks in one framework. Whilst its main thrust is prevention and screening, the Action Plan also acknowledges that “adequate treatment facilities and access thereto are urgently needed to cope with the growing number of cancer patients,” an area which is outside of the limelight of global action. While some cancers can be tackled through prevention and others through screening, there are some that will develop nevertheless. Most cancers demand resource intensive treatment and palliation. Technological developments have increased options but costs and geography have constrained access. Issues of catastrophic expenditures as a result of cancer treatment illustrate a health systems failing, and one which we observe and experience with impunity in Pakistan.
Our recent work at Heartfile in the stream of Heartfile Health Financing, our program to protect poor patients from catastrophic expenditures, provides us with a point of engagement with cancer patients who cannot afford their own treatment. We witness enormous suffering at the hands of a disease which is both emotionally as well as financially ravaging. The struggle to raise resources for patients is a constant reminder of the scale of the problem and the manner in which it impacts people’s lives.
To bring a granular sense of the impact of cancer on people’s lives, I am pasting below, a case history by one of Heartfile’s senior volunteers, Mariam Mehdi, who was assigned to visit Zeeshan, a patient with Acute Myeloid Leukemia, to assess his eligibility for getting support through the Heartfile program. This young lad was deteriorating fast with a full-blown onslaught of a cancer which has very poor prognosis. Two hospitals turned him away, including one which only admits patients who are ‘salvageable.’ Whilst this case came to us, we were caught between many difficult questions. With a wailing family knocking at the door, neighbors and friends weary of helping, and the patient’s condition deteriorating by the hour, we had some quick decisions to make. One of our supporters, Karachi-based philanthropist Hamid Jaffar helped this patient through the family-owned Sulemaniyah Trust—we were able to connect the donor with Zeeshan’s family through our online portal. Sadly, the boy was gone before the money ran out, but we have the gratification that we made his last days comfortable. He is one of the 13 million new cancer cases diagnosed worldwide. Luckily, all do not have the same fate.
Sayed Mohammad Zeeshan Ali Shah
This account has been written by Mariam Mehdi, who visited Zeehan in the hospital and assessed his eligibility for support through Heartfile financing. She also visited the family subsequently after his demise. Mariam Mehdi volunteers her time at Heartfile.
Life just collapsed. Zeeshan changed from being an active student to a helpless and frail patient lying on a bed in a room which he shared with three other patients at a tertiary care centre in Rawalpindi. The state-of-the-art facility has staff with significant experience in the treatment of cancer and leukemia, and is the most modern and well-equipped centre of excellence for bone marrow transplantation in Pakistan. Zeeshan was a healthy individual until early May 2012, when he developed fever, bruising, and dizziness, along with shortness of breath and extreme fatigue. His condition continued to deteriorate; he was admitted to a private hospital in Islamabad where he was diagnosed with acute myeloid leukemia (AML).
AML is a cancer that starts inside the bone marrow, the soft tissue inside bones that helps form blood cells. “Acute” means the disease develops fast. He stayed in the private hospital for five days and it cost the family Rs. 85,000 (US $1,000). He was then moved to Lahore to a specialty cancer hospital, a move which cost another Rs. 20,000 just in travel. Here, he was informed that they only treat patients under the age of 19 for bone marrow transplants! Following this, he was referred to Rawalpindi where he stayed till his demise. The family incurred a loan of Rs. 500,000 (over US $5,000), without which his treatment just couldn’t be initiated. He was given chemotherapy to kill the cancer cells and blood transfusions to keep him alive.
The treatment was mandatory as his condition was critical. The reality which faced Zeeshan was harsh. To be blunt, it all came down to finances. He was told that the disease is a fast-growing cancer of the blood and bone marrow. He underwent X-rays and an ultrasound of the abdomen to ascertain if the leukemia cells had spread outside the blood and bone marrow. He also had a lumbar puncture (spinal tap) to determine whether there were leukemia cells in the fluid around his brain and spinal cord. All these investigations entailed considerable financial costs.
The cancer journey for Zeeshan was a brief and very painful one. He explained that his experience of living with cancer was horrible and extremely dismal when he considered any possible future. The condition made him feel alone even though he knew his family was near. The disease ran through his mind relentlessly and he was still deeply in shock over the diagnosis. He said that he would battle this disease that had the potential to kill him. He missed his once active normal life. At times, he lost hope and felt like giving up on life. He was fearfully concerned about what the future held for him and his family.
Zeeshan was the eldest of a poor family of 5 on whom much hope had been pinned. All the aspirations of this family were on him – what they had not been able to achieve, they dreamt of achieving through this promising student. His father had a heart condition, while his mother was a chronic diabetic patient. The family was from amongst the internally displaced people, victims of the 2010 floods, and had moved from Nowshera. They had lost their home and all their belongings, and had moved to the outskirts of Islamabad in search of livelihood and shelter. Fortunately, they were given a one-room refuge by a local estate developer and in return Zeeshan, being a very bright student, was able to provide private tuition to the landlord’s four children. The family was content with this arrangement and paid the monthly utilities. Zeeshan’s father was a transport supervisor and in addition to supporting his own family of five, he also had to support his elderly father, a disabled brother with his spouse and three small children, as well as a divorced sister, all still in their ancestral village.
The approximate cost of the treatment would be around Rs. 4,000,000. The family had no financial means whatsoever to meet this. Zeeshan’s case represented a dilemma of the very worst kind. He did not know whether the treatment would save his life or simply delay his death. He also did know that the treatment would bankrupt his family and other dependents; but what did the future hold for them without their only breadwinner? He stated that he had privately given himself a death sentence. He kept on thinking to himself that there was no way he could get out of this situation alive. On the other hand, he was determined to fight and win the cancer battle, not merely for himself but for his family; he did try to develop a positive outlook on life and his future. Yet Zeeshan’s despair, uncertainty of any future, and fear were apparent as he shared his story.
Heartfile supported part of the expensive treatment in spite of being told that the disease was incurable. The organization is bound by the ethic that as long as there is life, hope must be maintained.
Zeeshan remained hospitalized from 6th June to 23rd July. On 22nd July, he wanted to go back home as he felt the end was very near but remained in hospital as he felt unwell. At this stage, he felt life had no meaning, and wished only to be released from the pain. He wanted to spend his last moments among his loved ones. However, this was not to be, as death came unannounced. On that same night, his father visited him, and Zeeshan said a final goodbye: “Father, when you leave, do not look back at me as it would intensely anger me and leave feelings of bitterness and unfairness of a life unfulfilled.” His father understood that his son’s death was nearing and immediately sent his wife and daughter to also say farewell to Zeeshan. When he saw his mother, Zeeshan said that he wanted to talk to her, but he was too weak to do so. Zeeshan died on 23rd July at three in the morning after 45 days of hospitalization.
Zeeshan’s parents, who were interviewed two months after his death, expressed immense despair and pain at the loss. They said that a part of them had died with Zeeshan; that this death had changed every aspect of their lives and their willingness to continue to live. His death had created an enormous emptiness. They had lost not only a child but a close friend, and an irreplaceable source of emotional and practical support. They were still grieving the loss of possibilities, of all the hopes and dreams they had had for their child. They said they would always grieve over the potential that would never be realized and the experiences that they would never share. The family had fought every battle seeking cure of the cancer, and become extensively indebted. They did not lose hope in spite of being constantly reminded by the treating doctors that there was no hope whatsoever of a cure. They had remained in a state of intense shock and confusion until the night prior to Zeeshan’s death. The mother said that she still wakes up every morning, thinking it is just a bad dream, but soon she remembers that her world has fallen apart. She had photographs enlarged of a healthy and vibrant Zeeshan which reflected the special feelings that the family is keeping close. The photographs serve as a reminder of a beloved child with memories of a joyful life, but also the reality of the subsequent suffering and pain he endured during his short but devastating illness.
The family further shared that the periods of intense sadness come and go. The waves of grief were all too frequent, and they realized that these feelings of sadness and loss would remain for life. The father, mother and sister showed their grief differently and here the gender aspect came out. The father was trying to control his emotions, to be strong and to move forward. He became engrossed in his work, which presented an escape from the grief. The mother and sister cried openly and wanted to talk about their grief. They said that they were surrounded by constant reminders and that since their job as caregivers to Zeeshan had so abruptly and tragically ended, their lives were without purpose. Nadia, the sister, stated that she had lost not only a sibling but a confidant and lifelong friend.
Zeeshan’s death has compelled his parents to rethink their priorities. They would like to return to the village to re-engage in life and take care of the rest of their family, as the purpose of being in Islamabad was only for the sake of Zeeshan’s further education and future. His legacy would continue after his death, they said. The memories of joyful moments spent with Zeeshan and the love for his family shared would always live on. These fond reminiscences would always be part of their lives and a background to their battle to cope with their emotionally devastating and financially disastrous experience.
-Ends-
Asma Badar says
There were times when NCDs were hardly ever seen on the health agenda and experts of this field were considered alians in the pro- MNCH public health world (For MNCH,Pakistan could not do much in the last 65 years, despite government and donor’s commitment, money and time). It was not realized until the ghost of double burden of disease actually invaded our land. People finally woke- up to the fact that NCDs were contributing to more than 50% of total death toll and realized that they should be addressed seriously. Heartfile was the pioneer organization in the field of NCDs Prevention and Control in Pakistan and Dr. Sania Nishtar became the voice for the millions, suffering from NCDs in this country. She fought the case for prioritizing NCDs prevention on all the relevants forums inside and outside Pakistan. In a backdrop of thin social protection fabric and enormous (73% )out of pocket payment on health treatment , Heartfile Health Financing program is an excellent example of some serious steps taken in the right direction.