Monday, December 31, 2007

கவலைப்படாதே சகோதரா



Cancerrealism is an imperative for the right not to treat cancer. The basis for such realism is afforded by the relatively more benign cancers such as chronic myeloid leukemia and chronic lymphocytic leukemia, as well as by the relatively more malignant cancers as of the bronchus, breast..


Cancerrealism என்னும் ஒரு நம்பிக்கையின் அடிப்படையை விளக்க முயற்சிக்கும் எண்ணத்தில் "The other face of Cancer" என்கின்ற புத்தகத்தின் தமிழாக்கம் கிழக்கு பதிப்பகம் "கவலைப்படாதே சகோதரா" என்கின்ற தலைப்பில் வெளியிட்டுள்ளது. இந்த புத்தகத்தின் விமர்சனத்தை என் அடுத்த பதிவில் பதிக்கிறேன்.

Tuesday, December 25, 2007

Poem on Christmas day

This poem was written a couple of days after the beginning of attack on Afgahnisatan as retaliation to the Sept 11th attack--

ஒரு கன்னத்தில் அரைந்தால் மறுகன்னத்தையும் காட்டு என்று..
நாம் நம்பி மண்டி இடும் யேசு சொன்னது நமக்கு அல்ல நம் எதிரிக்காக..

நக்ஷத்திரங்களோடு போட்டி இடும் வெளிச்சத்துண்டங்களை
வானில் இருந்து பொழியும் வெடி குண்டு மழையை ரசிப்போம்
சீறிப்பாயும் போர் விமானங்கள்.. ஆஹா.. என்னவேகம்.. என்ன வேகம்..

அந்த ஏவுகனைகள் அது காலத்தின் ஆச்சரியம்
எல்லாம் இரவு நேரத்தில் நடப்பத்தால் பார்க்க ரொம்ப உற்சாகமாக இருக்கும்.
நம் வீட்டு குழந்தைகளுக்கு வேடிக்கை காட்டி உணவு ஊட்டலாம்
நடந்த கோரத்ிறிறிக்கு சரியான பதிலடி என்று பெருமைப்படலாம்.

என்ன..

கீழே சில பச்சிளம் குழந்தைகள் மடிந்து போகும்..
பல யுவதிகள் காதலர்களையும்
ஒரு தேசம் கனவுகளையும் இழக்கும்
பின் வரும் தலைமுறைகள் பிளுடோனியக்கதிரை சுவாசித்து..
விநோத வலிகள் கொள்ளும்..
சூரியனையும் நீரையும் உணவாக மாற்றிதரும் பரிணம்மிப்பின்
ஆச்சரியமான தாவரங்கள் .. அங்கே உயிர் துளிர்க்க அஞ்சும்..
இதுவரை அவன் சொன்னதை நம்பாத சிலரையும் நம்ப வைக்கும்..

அதனாலென்ன..

நமக்கு தேவை வான வேடிக்கைகள்..
விண்ணில் மிதக்கும் செயற்கைக்கொள்கள் விளம்பரங்களோடு சேர்த்து..
வேடிக்கையை நம் வீட்டு படுக்கை அறையில்
துப்பும் வேட்கையோடு காத்திருக்கின்றன..

உன் ஒரு கன்னத்தில் மறு கன்னத்தையும் காட்டு
என்று நாம் நம்பி மண்தியிடும் யேசு சொன்னது நமக்கல்ல


......நம் எதிரிக்காக

Wednesday, December 5, 2007

Remission.net a video game for cancer kids



JilluBalaji


Diagnosis of cancer at any stage of life can be extremely overwhelming and traumatic. This experience is even more dramatic in the case of adolescents and young adults (approximately 15 to 35 years old), due to the developmental life cycle stage that they belong to. This particular group is already dealing with a range of issues related to education, career, and relationship and all that shapes up ones personal identity. Hence the diagnosis of cancer, which means a beginning of a long process of painful treatment and years of uncertainty, makes the additional burden of having to deal with cancer, an extraordinary and challenging time for them.

Even medically, this specific group seems to be unique in the distribution of the types of cancer, prognosis and causal factors. Majority of the cancer appearing in this age group are spontaneous, unrelated to either carcinogen in the environment or family cancer syndromes. The more disturbing fact is that there has been a lack of progress in the survival improvement, relative to all other ages in the last quarter century globally. National Cancer Institute, USA has recently acknowledged that this vulnerable age group is one of the under-represented in cancer studies and seeks to redress it.

This write-up is about an interactive play which aims to harness the power of the video game technology to engage young people with cancer, and deliver a positive health outcome. The name of the game is Re-Mission and the organization which developed the game is HopeLab.

Hopelab is a not for profit organization, which uses research based techniques and comes up with innovative ways to improve the quality of life of young adults with chronic illnesses. Re-mission is their first product aimed at cancer affected.

The game takes the player on a journey through the body of a fictional cancer patient, who represent young cancer patients with different types of cancer. Players control nanobot named Roxxi who destroys cancer cells, battles bacterial infections and manages realistic life threatening side effects associated with cancer treatment.




The game was designed to be fun and at the same time, impart knowledge about cancer, treatment regimens and through this knowledge aims to improve one’s confidence in their ability to manager their illness. The feeling of power over their illness that the children gain, as they blast away cancer cells in the game is in essence what the game aims to achieve.

The game was developed by a team of individuals with expertise in a wide range of disciplines, including research, psychology, game development and nutrition. The development team has worked closely with health cancer professionals to ensure that the medical terminologies used in the game were accurate, and that the goals of each missions represented a medically valid problem. They had also adopted an interactive game development process, to incorporate the input of young people with cancer, thereby ensuring that the game meaningfully reflect their perspectives. While there is an emphasis that the end product needs to be a fun game, it should not trivialize the larger objective that it is aimed at.

The developers of this game are also committed to the study of their interventions through outcome studies to ensure that the game developed is effective on its target audience. The study focused on the effect of the game and its influence on adolescents and young adults on the following aspects

- Adherence to cancer medications
- Knowledge about cancer information embedded in the game
- Quality of life
- Individuals belief in his/her ability to take a certain course of action in a challenging situation(the disease of cancer in this instance)

They report that the result of the outcome studies has been quite encouraging and these study and finding are openly shared with. I have had some personal interaction with the game developers and find them to be quite open to incorporating changes, adding new aspects to the game and demonstrate self-critical attitude on deciding about its effectiveness.

The PC-version of the game is made available to young people with cancer, free of charge through their website (remission.net). This site also provides an interactive, online community where teens and young adults with cancer can share information and support one another.

In addition they intend applying the insights gained from the development and study of this game to come up with similar technology-based approaches that affects young people with chronic illness. They are working on the following illnesses currently

- Obesity (Ruckus the game is available already)
- Sickle cell disease
- Major depressive disorder
- Autism
I intend to contribute for their outcome studies in the following way. I plan to organize a demonstration show on the game to a group of young cancer patients. Based on the reaction and relevance that they feel this in our socio-cultural context, we can organize an outcome study through a set of questionnaires to understand their reaction to the game. This input can be provided to the game developers and if they feel it makes sense they could incorporate it into the game.

Video game development is an extremely cost intensive activity. This would be not possible without huge financial backing and support. But certain aspects of this development process, like the knowledge about cancer information availability through an interactive medium, and the usefulness of that knowledge in enabling people to better deal with their illness can be made use and tried on
alternate techniques (online audio-visual tools as approaches to impart cancer information). Individual PC access for people in most hospitals can be an issue, but making available a common PC loaded with the game should be feasible.

With changing lifestyle and food habits, obesity among the kids and adults is also a major health concern in India. Hence their forthcoming product targeted at obesity can have a viable market in India. Hence an engagement with the game developers on their development methodologies can also make business sense.

Saturday, December 1, 2007

Novartis: Patent Issue for Glivec

KanneBalaji

A Chennai court has rejected a challenge to the patent law filed by Novartis in a law-suit against the Indian government, the Cancer Patient Aid Association (CPAA) and some generic drug manufacturers in India. While the aid organizations have declared the ruling as a victory for the “right of patients over patents”, Novartis claims that the verdict will have long term negative consequences for the development of better medicines.

Novartis had claimed a patent for their anti-cancer drug Gleevec (known in India as Glivec). The cost of Glivec for a patient for one year is around 1.4 million INR, while other companies sell the generic version of the drug at about 1/10th of that price. The patent was denied by the Court on the basis of Section 3d of the Indian patent law which disallows patents for incrementally small innovations.
Had the case gone in favor of Novartis, it would have prevented the generic manufacturers from producing the drug at all. This case was very keenly followed by the international pharmaceutical industry, global relief organizations working for greater access to public health and generic drug manufacturers. There are about 9000 patent applications pending before the courts, most of them reflecting a scenario similar to this one. The way these cases are settled would thus have a profound influence on the production and sale of drugs for a wide range of diseases affecting the world.


This issue involves many powerful players with conflicting interests, with each trying to influence patent protection clauses for their own benefit. This article is an attempt to understand the view points of these various stake holders on the broader issues of patent protection and its consequences to (a) research and development investments by pharma firms, and (b) access to life saving drugs by the needy.

Linked to this is the vibrant growth of Indian generic drug manufacturers’ role in producing medicines for export to developing countries, and even to developed nations. As all these issues are inter-connected I will address them as a whole and, when it is relevant , discuss specific items. This article is organized as follows: I first present brief background information to understand the issues and then present different view points, and finally offer my perspective on the matter.

To start with, let us understand the issue of pharmaceutical patents in the Indian context. A patent is an exclusive right granted by the Government for an invention. This invention can either be (a) a product or (b) a process that offers a new way of doing or making something. Once the patent is granted, the invention cannot be commercially made, used, distributed or sold without the patent owner’s consent. The validity of the patent is for a fixed period, usually 20 years, during which the patent holder can exclusively profit from the invention. Therefore, it is understandable that large amounts of money are spent to obtain and protect patents.

Patents for pharmaceutical substances can be of two types (a) Product patents, which are given for a given chemical substance, say a drug, or (b) Process patents, which are for a specific way of manufacturing the substance. In the former case, the product patent allows the patent holder to profit exclusively from the drug, whose manufacture by any method is disallowed to others. In the process patent, however, others are forbidden only from producing the drug by the patented method but are free to manufacture it by another process of their own devising, which in turn could be patented.

For a long period of time, India granted only process patents for pharmaceuticals. Therefore pharma companies were free to devise a non-infringing process to manufacture a drug even if it was protected by a (process) patent in India. This changed when India became a member of WTO. As part of its obligation to comply with the TRIPS agreement, the Indian Patent Act now allows a product patent to be granted for a period of 20 years if it satisfies internationally accepted criteria for patentability. However, the amended law also includes, in Section 3(d), a provision that is unique to the Indian Act which states that patents would not be given for “incremental innovations”, i.e., new forms, uses or minor modifications of existing drugs unless they have a demonstrated greater “efficacy” than the earlier known one.

Given the current evolving phase of Indian patent laws, and the ambiguity of terms like “incremental” and “efficacy”, Novartis and other multinational drug manufacturers, as well as the groups opposing their patent claims, strengthen their arguments through self-serving interpretations of the Act. These technicalities and the nuances of patent laws appear obscure and are not the primary interest of this article. Those interested can refer to Novartis for Novartis’ point of view and to Medicine Sans Frontiers for the alternate argument.

The main concern of this article is to reconcile two opposing views. On one hand many people believe that is ethically untenable that patent law should offer the inventor company exclusive rights and monopoly on their invented product, giving them the freedom to make large amounts of profits from their product at a price fixed by their own choice, thereby leaving people who cannot afford the medicine to suffer, or even to die. On the other hand, pharmaceutical industries claim that protecting innovation, and the gain through innovative products, is the foundation for R&D investments made in the pharmaceutical sector. Without patent protection, the latter view goes, there would be no innovation and no new medicines.


There do exist some provisions which individual governments can exercise to provide medicines for those who cannot afford the prices dictated by the pharma companies. These are in place, at least theoretically, to enable the supply of essential medicines to poor countries and poor people. Section 3d of the Indian patent law is one such provision introduced by the Indian government for public health safeguards. This clause forbids the issue of patents for incremental innovation.

There is no clear consensus on what actually falls into the purview of incremental innovation. Section 3d is aimed to protect genuine improvement by barring frivolous tweaking being passed under the garb of innovation. It was introduced to prevent a practice termed "ever greening"--- i.e., drug companies making minor modifications to existing drugs so as to re-patent them at the end of their patent period, and selling them as new and improved products.

However, Novartis has argued that most medical progress happens through incremental innovation. And if the Indian law does not recognize these advances, it would negatively affect the development of better medicines.


On the other hand, Medicine Sans Frontiers, one of the leading NGO voices against Novartis, feels that allowing patents on minor modifications would actually be a disincentive for companies to address new medical challenges, for it would be more profitable to work on minor changes for patents than in investing on breakthrough innovation. And as an aside, it also argues that pharmaceutical research is driven by market potential, and as people in developing countries do not have the purchasing power to attract research funds for the serious diseases that affect them, pharmaceutical research primarily focuses on anti-wrinkle creams and anti-obesity drugs.

However, while I admit that research funding decisions are based on a cost-benefit analysis to maximize profit earnings, I believe that the typical culture of a research organization will certainly not be driven by such narrow attitudes. Furthermore, working towards incremental innovation and original inventions are usually not two exclusively different paradigms. In fact, most breakthrough inventions are achieved as one quantum leap in an incrementally innovational process.

As regards the other problem, of research focus areas not being relevant to the concerns of developing nations, this could be better achieved by working out innovative collaborations with pharma companies, than by denying them patent protection and depriving them of their profits.

Let us consider the Indian example. For a pharmaceutical company, the Indian market is not a homogenous entity. While there exists a large population of poor people with limited or no access to health care, there also exists a sizeable affluent population. A blanket protection against high drug prices, in the name of the poor, resulting in medicines being offered at cheap prices to affluent people cannot be a rational policy. Hence the Indian government can try to work on a differential pricing arrangement with pharma companies for the different markets that India comprises. The Indian government (or alternate monitoring/regulatory global bodies) can in return persuade the pharma companies to invest the profits gained from the affluent section of its population in medical research of concern to the country.

Research organizations like Novartis should work collaboratively with generic drug manufacturers, without claiming monopoly rights for critical drugs, to enable greater medical access to the entire population. The generic pharma companies in turn should reward the inventor by sharing a part of their profits for drugs within the patent regime sold in developing countries and the patent-expired drugs they sell to developed nations. Both players can thereby evolve a workable business strategy based on mutual trust.


Let us now consider the much-discussed issue of public access to drugs. Sustainable access to medicines in developing countries is a complex issue. Improving access to healthcare depends on a variety of factors
existence of trained healthcare staff and infrastructure
accessibility of the healthcare facility and quality of care
availability of affordable medicines
cultural acceptability of treatment(e.g. Islamic groups opposition to the polio vaccination drive in India recently)
and other factors.

The availability of medicines at reduced, off-patent, prices is just one aspect to this complex problem. That said, it is however a significant factor and a genuine commitment to address it is needed.

In the Glivec case, Novartis asserts that it is strongly committed to ensure that all patients have access to the medicine they need, and claims that 99% of the people who need Glivec are given the medicine free of cost through the Glivec International patient assistance program(GIPAP). However, this cannot be extended across the spectrum of other patented medicines. I believe corporate donations are not a sustainable solution to the problem. On this issue, all international pharmaceutical companies should come forward to work with government or non-governmental organizations for greater public access of patented medicines. This should not be just regarded as a public relations exercise to demonstrate their corporate social responsibility. A few things that these pharmaceutical companies can do are to

· offer not to file for patent protection for certain drugs in very poor countries and work with the respective government to enable access to the medicines that are needed locally. Such an act will gain them greater respect and credibility in the eyes of public.

· collaboratively work with drug manufacturers in poor nations to deal with
Infrastructure and stock-out contingencies.

An open attitude harmonizing corporate patent profit objectives with the privileges conferred to generic drug manufacturers, and concern for a general access to health care with an acknowledgement of the obvious buying power of the Indian affluent class, would facilitate policy development on a case by case basis for individual drugs. Upon such learning from individual cases can be evolved a generic strategy to attack this most important health case issue of our time.

Focus of this Blog

This blog will primarily focus on health related issues(Cancer and neo-natal care in particular). All forthcoming posts in this blog are dedicated to Jillu(my daughter) and Balaji(my brother).
I hope and commit myself to be regular with my posts.