Here’s something interesting that happened yesterday. I was going about my routine Tuesday afternoon work when I was interrupted by a lady who walked into my office. She had a cute 4 year old boy by her side. The lady introduced herself, telling me she was the daughter of a maid who used to work at our house a long time ago. As she spoke I could not help but notice the little boy, Rehman was his name, as he had already started fiddling with a pen that had been sitting on my desk. As my attention shifted back to the mother, she handed me a prescription for Rehman. They had been to a hospital just a few hours earlier, and the boy had been diagnosed with an inguinal hernia. The mother was in despair because the people at the hospital had deemed the hernia repair a routine procedure, and had asked his mother to get registered for the waiting list for elective surgeries. Guess how long that waiting list is. Rehman is scheduled for surgery some time in 2016!

It troubles me that a child would have to wait four years to get a minor surgical procedure. Rehman’s condition is not an emergency on most days. He is perfectly fine most of the time, but when he runs around and plays with his friends, the hernia starts to hurt. In fact the last time it hurt so much that the little boy nearly passed out.

 

It is plain for all to see that health care facilities in our society are overwhelmed.  As a nation we simply do not make health care a priority. We spend less than 3% of our GDP on health. While the government has set up some excellent facilities and centers of excellence, there is simply not enough capacity in the system to cater to all of our needs. No one should have to wait four years to get a minor procedure. The alternative is for patients to seek health care in private facilities. In fact more than 70% of health care in Pakistan is now provided by the private sector. That however does not mean that all private health care facilities provide good service. In fact, there is a large chunk of private health care facilities that provides very poor quality care. While the child may not have to wait for surgery in such a facility, he may develop infection afterwards.

We could dwell for a long time over the pros and cons of the various healthcare solutions. We could talk about universal healthcare and we would talk about private versus public care. But this post is not about numbers and pointing fingers. This post is about a boy who needs surgery. A small, 15 minute procedure and he will no longer be afraid to run or climb a  tree.

I do not have the solution to the larger health care crisis. I don’t know how or when we will be able to provide reasonable care to all who need it. But I do know people, and I can call in a couple of favors. Rehman is scheduled for surgery tomorrow morning. We will figure out the rest later.

Have you ever met patient of Hemophilia? Have you ever met a young boy in the arms of his father, holding his swollen knee in pain, as he waits for an injection of a factor concentrate that will stop the bleeding? You should see the despair in the father’s eyes, who knows his son is destined for a lifelong battle with a bleeding disorder for which there is no cure. But you should also see the glow in the young boy’s eyes, who knows he will be fine once he gets the Factor. He can’t wait to get back to playing cricket!

 

Disease does not discriminate between the rich and poor, but in a country like ours, it is not hard to imagine that most patients of Hemophilia cannot afford long term care. According to some estimates, more than 75% of Hemophilia patients in our country do not receive the appropriate care for their illness.

There are, however, a few bright spots in this otherwise gloomy picture. While many patients remain unable to access adequate care, there are also a number of patients who are now getting reasonable Hemophilia care at no cost. Hemophilia Patients Welfare Society of Pakistan is a charitable organization which is responsible for this change for the better. The Society was founded almost 20 years ago by a group of doctors who were caring for Hemophilia patients. Over the years the HPWS has worked to raise awareness about Hemophilia, and directly assist in the care and management of Hemophilia patients.

 

Today the HPWS has more than 400 Hemophilia patients enrolled in its care program. These patients visit the Society office for free medical consultation, diagnostic and monitoring work up and management through injection of Factor concentrates.

 

I am honored to say that my father was one of the founding members of the HPWS, and Chughtais Lahore Lab has provided diagnostic and medical consultation services to the HPWS since its inception.

 

Hemophilia care in Pakistan does not begin and end with my lab or with the HPWS. There are many, many doctors and charitable organizations working to serve Hemophilia patients. For instance the fine people at the National Institute of Blood Disorders in Karachi are doing some excellent research on Hemophilia and Thalassemia, and serve a large number of Hemophilia patients.

 

World Hemophilia Day is upon us.  It is a reason to note the long way we have to go to serve all Hemophilia patients in Pakistan. It is also a day to celebrate the many thousands of patients of hemophilia in Pakistan and across the world, who refuse to let their illness define their lives.

It’s been some time since I wrote a blog post.

 

So much has been happening that it’s a little hard to wrap my head around it all.

 

Perhaps most significantly, my grandfather passed away about two weeks ago. He had been in the hospital for surgery, and though the surgery went well, I think his body was too weak to cope with it. He was 95 years old.

On the day that he passed I sat down and wrote two pages worth of memories I had of him. Some good, some not so pleasant. I was fortunate to have him in my life. He was a wise man. He had seen the world. He had fought in World War II. And he had always been a presence in my life. Losing him was not easy. I wish I had spent more time with him. I wish I had asked him more about all the stories he had to tell.

 

It has now been a couple of weeks and it’s a little easier to remember all the fond memories. Perhaps in a later post.

 

In the mean time, I will follow his life-long advice to me, and will not leave anything half done. I had stopped blogging because I felt there was just not enough time. But I have lots to say. And I am going to do a better job of being consistent.

 

So here . . . . .we. . . . .go!