Friday, May 25, 2012

Disability and the Developing Word: The Saga of Albert

It was ten minutes to eight and our journey began, in the twilight, as we toddled through the villages in Anomabo, Ghana.  Under the moon-lit sky, we followed gravel-pitted and pot-holed gullies that meandered through these villages.  Were were accompanied by Sister Elizabeth, a passionate nurse who worked at the only clinic in the village of Anomabo.

At the sight of Sister Elizabeth, the villagers began to swarm around her, momentarily forgetting their tasks as well as their sorrows. They hugged her, held her hands, and instantly a bright smile started to emerge from behind the vacant faces of these people as if the presence of Sister Elizabeth radiated a contagious sense of euphoria. The villagers called her Ma Elizabeth and so did we. During the entire stay in Anomabo, she escorted us, serving as our guide and key informant. She took us from one house to another, and stood by while our conversation with the physically challenged resumed around the fire-pit. Our discussion with the disabled continued throughout the night, and against the yellow backdrop of fire-pit fire unfolded the saga of their lives, of unsung heroes and societal negligence.

On our first visit, we meet with Albert, a fifteen year old boy who languidly lay on the corner of a straw covered hut. His skin was covered with bronze colored mud. His mother stood next to him like a Greek statue, with a permanent look of hopelessness etched on her face. My eyes averted from the mother to the boy and began to inspect him from the tip of his paralyzed leg to his inquisitive eyes. The mud covered skin of this child contrasted against the background denied his existence at first glance. But soon my eyes met his and I was immediately drawn to this child as if those eyes were screaming at me, trying to reveal to me an age-long secret.

Albert’s story echoed the sagas of countless other disabled children in Africa: it began with Polio, a disease that seems as distant as the Bubonic Plague to a westerner. Like most babies, he probably amused his parents by taking his first stumbling walks in the yard before his first birthday. But one morning he woke up only to discover that his newfound capability had been snatched away from him.

The rehabilitation doctors examined Albert. They stretched his legs, pressed down on his ankle and feet, and tested the reflexes. My eyes were still on the boy, and I could sense his amusement at doctor’s instructions. After decades of neglect and rejection by friends, families and neighbors, he was certainly enjoying our company. At the end of it all, the doctor diagnosed him with polyradiculopathy. For a moment the students looked at one another, confounded by the new word. Then the doctor explained that polyradiculopathy is a neuromuscular disorder that causes the patient to lose control of the lower extremities. He told us about how providing care early on the disease, giving him a splint and daily exercise could have given Albert more strength in his trunk muscle and his legs. In Albert’s society there is an enormous belief that those with physical disabilities are also mentally deficient and that’s why the doctor explained to the mother about Albert’s functional brain. The doctor looked at the mother and told her about Albert’s potential. He discussed sending Albert to school, explaining how Albert could achieve anything he desired. The mother listened to his ideal talk with a gesture of indifference, and a blank stare of a bored student.

The entire time during our stay with Albert, I saw a weight of burden in the mother’s face. But is Albert a burden? In the United States, children like Albert are readily seen on school grounds, at shopping malls and cinemas. They are rarely, if all, seen tossed in the yard, like fenced animals. However, in a place like Ghana, where stigmas and taboos are still woven into the very framework of the country, giving birth to a child like Albert is not a blessing but a burden.

Venturing through the country and talking to people for three weeks, I was able to comprehend the degree to which cultural taboos infect the Ghanaians. While for most westerners the cause of disability is merely biological, people in Ghana blame this occurrence on black magic or on evil deeds committed by the parents. When I inspected my driver’s view on this issue, he told me that it is the result of a child being conceived in broad daylight. Though this explanation might strike the average westerner as odd, it is well embraced by many in Ghana.

It is believed that the consequence of bad deed can be channeled to next generation, and as a result, people refrain from advancing any relationship with the disabled or their family. A girl might spend the rest of her life unwed because one of her family members is disabled. In Ghana the burden of disability, a seemingly individual problem in the States, becomes a collective predicament. This is why when a child is born disabled, the family refuses to come forward to address the issue for fear of not only shaming the immediate members of the family but of disgracing the entire community. My interview with some members of the community who are sympathetic toward this issue revealed that children with disabilities are sometimes drowned or abandoned in the forest to avoid getting stigmatized and shunned by society. It is this very reason why Albert, like many others, lies aimlessly in the corner of a yard, like a despicable creature not worth anyone’s sight. It is this very reason why Albert’s parents did not bother to provide medical care or send him to school.

While he may never become a famous football player, I can certainly see Albert becoming a word-class banker or a politician. But to the Ghanaians the prospect of a disabled person going so far in life seems surreal. During my visits to banks, hospitals and schools I was shocked to see how inaccessible these facilities were to those who were not entirely able-bodied. Talking to the school children I learned that none of their schoolmates were disabled. I was surprised to learn from one regular churchgoer that e

Thursday, July 14, 2011

Treats, Not Tricks: When Brand Name Drugs Fall Off the Patent Cliff

A pharmaceutical company may spend years of research and billions of dollars to develop a new drug with the expectation that the time and money invested will be rewarded by a patent for its innovation. But what happens when the patent expires, and the company loses its exclusive right to market the drug? One strategy used to avoid this fate is drug repositioning. In this case, the patent is extended under the claim that the drug has additional therapeutic applications beyond its original indications. For instance, if a drug was initially developed for depression, and has since proven effective for treating heart disease as well, its patent can be extended for another 10 to 17 years. Another approach is to develop “me-too” drugs, whose activity is unchanged, but due to changes in formulations and packaging, have easier dosing regimens. These drugs benefit manufacturers because they are easier to develop and generate new patents, but confer little benefit to consumers.

Perhaps the most devious tactic pharmaceutical companies use to avert falling off the patent cliff is “pay-for-delay.” In this scenario, brand-name companies delay generic competition by paying a competitor to hold its product off the market for certain period of time.

Typically, brand-name pharmaceutical companies challenge generic labels’ entry onto the market and litigation ensues. For the brand to prevail and block generic entry, it must defend the validity of its patent and demonstrate that the generic product would infringe upon those patents. Given the cost and uncertainty of patent litigation, pay-for-delay agreements have become common practice to settle such legal matters. In fact, brand-name pharmaceutical companies are using pay-for-delay to hold off generic products for substantial periods of time even after patents expire.
Pay-for-delay is a “win-win” for both companies: brand-name prices stay high, and the brand and generic labels share the benefits of the brand’s monopolistic profits. It is the consumers that lose. They miss out on generic prices that can be as much as 90 percent less than brand price.

While it seems to breach the United States Antitrust Law, pay-for-delay practices have been widely accepted as legal. The Federal Trade Commission has taken actions against such practices with little consequence, perhaps because consumers have not claimed the power to challenge the system. Additionally, health care professionals, who are consumer advocates, have been unable to infiltrate the necessary bureaucratic institutions to effect change.Proponents of pay-for-delay practices argue that due to the expense of the drug development process, having longer patents and the ability to profit for longer periods of time provide incentives for companies to invest in new innovations. While patents do promote innovation to some extent, however, having ] patents that last too long discourage pharmaceutical companies from pursuing newer and better products.

Without question, pay-for-delay agreements have significantly hindered consumer savings and affordability. Pharmaceutical companies need to balance promoting innovation with ensuring access to essential drugs. Most importantly, consumer and health care force unite in pressing Congress to pass legislation protecting pharmaceutical consumers from such anti-competitive agreements.

Sunday, June 20, 2010

Palliative Medicine: How Meeting the Dyings Turned Me Toward Medicine

I have grown to love and admire the work of physicians who treat terminally ill patients. Though my experiences in the Palliative Care Unit were in defiance to my earlier dreams of curing diseases and saving lives, I have grown to appreciate the practical aspects of a physician’s life. As my romantic views of medicine metamorphosed into pragmatic ones, I began to realize that one can gain satisfaction not only through curing diseases, but also, through helping someone feel better by listening to their stories, and serving as a support as they struggle to grasp their fate. Here in the Palliative Care Unit, I learned that making ethical considerations could become an everyday matter in a physician’s life. “Should we continue with treatment? Or, should we allow the patients to live the remaining days with friends and families without the undesired effect of chemotherapy?” Posing these questions, though uncomfortable, are often part of a physician’s job. Shadowing in the Palliative Care Unit, I began to understand that the role of a physician could extend beyond the pen and the prescription pad. Sometimes, issues such as “who will cook for the frail patient” may become a concern of a physician. As I reflect on my experiences in the Palliative Care Unit, far from turning me away, it got me more interested in confronting the challenges of a physician, and most importantly, I learned the significance of approaching the patient as a whole, and not only as a vessel for illness

Saturday, February 13, 2010

Bench to Bedside: Where is the Focus on Bedside to Community?

From the first day I stepped into the Jobst Laboratory at the University of Michigan, the idea of discovering causes and cures for diseases intrigued me, and as I matured, I could not imagine a better way to make my contribution to humanity than to be part of this discovery process. I have always been interested in Chemistry. Few years ago I moved to the University of Michigan College of Pharmacy to major in Pharmaceutical Sciences, and when I finally got my hands on this subject, I have naturally wondered "Could we deliver drugs using red blood as a delivery vehicle?" I was inspired by my peers and mentors. I began to imagine a day when my discoveries would sooth the pain of many. But was I too romantic with such imagination? Perhaps.

Few years ago I joined an organization called GlobeMed which is focused on understanding health care disparities. While serving in underprivileged communities as part of this organization, I became aware of the rift between scientific innovations and access to such innovations. In these communities, I came to realize that making novel drugs available does not necessarily mean simply putting these drugs in the hands of people who need them. In the world of translational research, we boast about getting discoveries from bench to bedside, but in the process, what we forget is translating discoveries from the bedside of few to the bedside of all.

Of course, I am undermining the role of investigators and scientific investigations. We should not stop our inquiring mind. I haven't. I still plan to continue my passion for research and am still asking the same questions I asked myself many years ago: "Could we deliver drugs using red blood as a delivery vehicle?" But along with asking this question, I have also managed to ask myself: Will be mother be able to access such a innovation? Hopefully, such questions will enable us to realize that scientific innovation alone is not enough. We need to come out of the constrain of laboratory and to collaborate with other disciplines to make scientific innovation more accessible to people.

Sunday, January 17, 2010

Beginning...

I have opened this blog for almost two years now. Unable to find a perfect name for my blog, I have postponed writing anything. Finally, I have agreed on a name: Journey. I think this is a perfect name for my blog because I plan to write in this blog of all the events, thoughts, trials, and triumphs that mark my life. In short, I will be writing about the journey I make in my life. At this point, I do not intend to write on my blog regularly. I will only transcribe when I feel I am consumed with thoughts tickling my mind and waiting to be told to the public or just needs an outlet to crawl out of my mind.

Let us see how this work...