Sex selection

October 15, 2006 at 4:26 am (Sarah's Posts)

Since the passage of the 1994 Prohibition of Sex Selection Act, it has been illegal in India for medical personnel to use any sort of diagnostic tool to determine the sex of a fetus. This is in response to a frightening data set that shows that there are many fewer female children being born than male children; because of a strong cultural preference for males, it wasn’t uncommon for couples to abort a pregnancy if it was to be a female child. I found the child sex ratio numbers (number of girls born/number of boys born*1000) staggering. From just a few states in India, they are Punjab (793), Haryana (820), Gujarat (879), Maharashta (917), Kerala (963). Even more disheartening, the numbers are actually declining. My prof explained that there is a lot more pressure now in India to have fewer children. When you only have two kids, it gives you fewer chances to have a boy, so there is more pressure to terminate a pregnancy if you can tell that it will be female child. So, the gov’t made it illegal to determine the sex of a child before birth.

So now, my prof and several senior students in the department have designed a genetic test that measures whether an unborn child has the genes for hemophilia. The problem is that hemophilia is a sex-linked disease—only men get it while women can be carriers. The gov’t doesn’t want to allow this test because it determines the sex of the child. They have proposed that the standard of care should be to only administer the test to people who have a genetic history of hemophilia. They would only find out if the woman were carrying a male fetus that was positive for hemophilia. If the child was a female carrier, that information would not be disclosed and would only be considered when the girl was grown and planning to have her own children.

One more story about how complicated policy can get when we take into account the cultural backdrop. For now, I’m going to keep my editorial comments to myself for the moment because I’d like to hear what other folks think when they hear about this.

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23 Comments

  1. sstolper said,

    Sarah, why does the test need to be administered pre-birth? Is there something to be done before the child is born?

    And why can’t the test be conducted on anybody? If the child has hemophilia, then it’s a boy, which is a “good” thing, and if it doesn’t, then nobody needs to know what the gender is, right?

    What’s the word on the evolution of this cultural preference for the male gender?

  2. misarita said,

    There is treatment for hemophilia, but in an Indian context that treatment is extremely expensive and not always available, which destines most children born with hemophilia to extremely painful and short lives. In the US, the treatment is given and hemophilia patients can life fairly normally. But here, most parents who find out that their potential child is to be a hemophiliac will abort the pregnancy.

    Theoretically, they could simply not say if the child is a girl or boy and only give a positive readout if the child will have hemophilia. But, because the law prohibits any tests that determine gender, the question is whether or not they will allow this test. The gender ratios suggest that people are going around the system and doing antenatal sex tests anyways. With a mostly unregulated healthcare system, there is no insurance that the hemophilia test wouldn’t be used as an easy and legal way for docs to tell people the sex of a fetus.

    The cultural preference for males goes way back, and I can’t say that I could really explain it all. Some of it is utility–men will work and bring home money. Women will cost a dowry. But is it a whole history’s worth more complicated than that… Something that I’ll have to look into more.

  3. sstolper said,

    I pretty much took the ethics of the doctors in India for granted when formulating my questions. I suppose once the test is allowed, it becomes a lot easier to bribe a doctor into giving away the gender of the child to be born.

    Aborting hemophiliac fetuses – well, that makes me wonder about the perspective on abortion in India. How does culture and history play a role in stances on abortion? I am aware that this question, like my last one, is not fully answerable in a sentence or two. But please, enlighten me as best you can.

    Last year I did some work related to hemophilia treatment as part of my thesis. My advisor, Dr. Herman Vandenburgh, does a lot of work concerning muscle tissue engineering. It turns out we’re still really far away from a fully functional replacement for damaged native muscle tissue, because innervation and vascularization are tricky. But as a vehicle for therapeutic delivery, a muscle could be useful a lot sooner. I must’ve made about 100 muscles last year. The muscle cells I used to make them had often been transduced with a gene for growth hormone or factor IX. Factor XI is a part of the blood clotting pathway that hemophiliacs are often missing and is thus part of that expensive treatment that hemophiliacs in the U.S. receive. But still, I am under the impression that the treatment is sometimes prohibitively expensive, is only administered more or less annually, and doesn’t include certain integral clotting factors. A muscle that secretes extra factor XI would be a continuous and consistent form of treatment (not to mention less expensive), assuming it is successfully integrated by the body and connected to a blood supply. I wonder where my former lab is at now with this research.

  4. misarita said,

    Enlighten you? As if I have anything other than the muck that rolls around in my brain here…

    Abortion (or Medical Termination of Pregnancy-MTP) is well accepted and legal here. It is even used as a spacing method for some women who don’t have the social/cultural ability to use other forms of contraception. India’s main health focus is on population control, as evidenced by the fact that their national healthcare budget is primarily funneled into such programs. It strikes me that the cultural acceptabilty of practices like abortion often come from the needs of the society at large, which get written into policy. At the same time, society notices a certain trend (like too many kids and not enough money to take care of them) and so they are open to policies that change those problems. I remember hearing a theory once that evaluated different societies and their openness to homosexuality as a function of their need to expand their population. Their theory was that societies that were in need of a growing population were less likely to be tolerant of homosexuality. No idea how these things permeate the psyches of individuals, but it is interesting to me how some of the things that we hold so fundamental like ethics can be shaped by our context. Makes everything seem so… relative.

    Hmmm… I’ve heard the most about Factor VIII, but I don’t know enough about hemophilia to really say. Would love to hear more about your research, though. I’m big into treatments that don’t require constant maintenance, unlike the current treatments of Factor VIII injections. Love to hear more about that research. Would there be any way to make it accessible to a wide range of folks? Or is that too far down the line to ask?

  5. msoule said,

    Just a brief word on patriarchy in Indian society. It’s really hard to say what the origins are, but it is extremely strong. Men thrive much more than women there and it’s one of the things that drove me absolutely crazy about the place.
    A quick story to illustrate: It is common knowledge that if a husband and wife are diagnosed with HIV and they can only afford one set of ARVs, he gets them. It doesn’t matter that the reality of the situation is that the women often do a majority of the backbreaking labor that sustains the household. And in these situations, the woman is cast out from her family but the man is grudgingly taken back if his wife happens to die. This is just one way this problem manifests.
    In Delhi near one of the bus stops I used frequently, there was a billboard saying, “Female Infanticide is a Crime!” with a picture of a baby wrapped in pink cloth. Always disturbed me. How is the decision made? It could be that parents would rather have a child who will take care of them in their old age. I also just realized that speculating about this is pretty pointless, because in my short time living there, I don’t fully understand the forces at play. We oughta ask someone who lives there. Sarah, would you ask some people about female infanticide? Ask the important “Why?”

  6. msoule said,

    And Sam, this is what we were talking about before, right? Making technology and then making it widely available. Scientists are super cool.

  7. sstolper said,

    So in the case of abortion, either there are very weak (or no) cultural walls against it, or the need was just so strong that it overcame these walls. What’s going to happen with the gender imbalance? If India responds to its needs, then I would think sometime very soon men would start to realize that there aren’t enough women and stop obeying whatever perverse male-prioritizing values they have. I wonder what it is about men that is so desirable; all I can think of is the emphasis on technological advancement in India that at least the media hypes up. This is why an understanding of another’s culture is so important, I guess. I’m sure there is some improvement to be made through attempts to change the cultural mindset of male superiority. I’m starting to realize how dangerous a situation it is to be an absolutely enormous country, with huge poverty and health issues, advancing waaayyy to fast technologically and economically.

    Right, so I don’t know so much about hemophilia either. I know that for the past decade, the lab I worked in last year has been working on BAMs (Bio-Artificial Muscles), which are made with muscle cells that can be transduced with genes for any number of proteins. Growth Hormone has been the most common, but various others (Factor IX, VEG-F) have been used. In a moment, I’ll post a word document with 3 abstracts and 1 review that I just found, written by my boss Dr. Vandenburgh very recently apparently. In particular, part 4 of this review, entitled ‘Bioengineered Striated Muscle for Therapeutic Protein Delivery’ is of interest. He mentions factor IX (F9) here and cites a paper which I have not read that shows his method’s efficacy.

    You’ll notice the abstracts are from a while ago. It’s not that easy. Any tissue implanted into the body needs a blood supply, and to actually be active, responsive to the body, it needs a nervous connection. The blood supply thing in particular is really important, and the muscle often deteriorates quickly after implantation. I experimented with different protein scaffolds (the cells must grow within some sort of structure), some of which are vascularized better than others in vivo. Also transducing muscle cells with VEG-F would allow the implanted muscle to secrete this factor, which is known to stimulate angiogenesis (new blood vessels). All this doesn’t even acknowledge the fact that actual clinical testing and approval would take years and money. But if it eventually succeeds, it’s a huge improvement over the expensive annual incomplete injections for hemophilia, not to mention all the other applications.

  8. sstolper said,

    Michael, I didn’t notice your comments until after I posted. I agree on all counts, though. Yes, I’d like to know why. Yes, that billboard is creepy. Yes, scientists are superhuman. I mean, cool.

  9. misarita said,

    Oh oh! Read The World Is Flat for more thoughts on technological advances and how they are drastically changing countries like India and China. Really interesting read. And Sam, I wouldn’t say that they are advancing way too fast… this country desperately needs the technology and the economic strengthening that comes with an open economy (although I’m talking outside of my league here). They just need to be extremely conscious, or these advances will only heighten an already too large divide between the haves and the have-nots.

    But the gender preference issue goes back much further than the more recent technology boom. I would guess that a lot of it is due to traditional roles of women and dowries. When you have a daughter, you know that you will be paying a huge amount for a dowry and you will be giving her away to another family when she gets married. A son is yours, and will eventually bring a wife into the home to work. So, your own daughter is less useful in the long run.

    I just read a shocking quote:
    “Sen, who has just been awarded the 1998 Nobel Prize for Economics, has calculated that, globally, on the planet some 100 million women are missing, due to a variety of discriminations that result in their premature death.” -Giuseppe Benagiano-

    I’ll ask around some more.

  10. msoule said,

    Every time I hear any American politician (dem, rep, whatever) talking about furthering free trade, I get violently ill and change whatever channel I’m watching. The most powerful nations of the world close their economies until they are ready to compete on the world stage. As of now, the world basically looks to India for cheap labor and MARKETS. The US is drooling as the Indians take down their trade restrictions and foreign investment restrictions because the “untapped market” is so huge. Sure, the idea is that we buy Indian goods too, and because they’re cheaper, they outcompete our goods and everybody makes what they make best and we all do better. Thanks, Adam Smith. It’s a really nice idea.
    But I have a cultural problem with this. The homogenizing effects of global trade (McWorld, as Benjamin Barber puts it) are so sad and boring and I hate to see them descend on a place which is one of the last bastions of truly incredible, vibrant local diversity. Let’s take language for example. India is a country 1/3 the size of the US with 30-odd major languages and hundreds, if not thousands, of dialects. They have a saying that every hundred kilometers, you find a new dialect.
    Once the global open market steps in, there is only one language. And only those who speak it flourish. Bye bye, diversity of communication.
    Not to mention that trade is far from free. We impose our “free trade” mantra freely (ha, but seriously) on other countries while we harbor plenty of subsidies and trade restrictions ourselves. Not only is it hypocritical from the moral standpoint, it is also unfair and damaging from the trade standpoint. If trade was truly free, any process requiring manpower would take place in India and California would not be one of the largest rice producing areas in the world. African cotton farmers starve because of the ludicriously high (nearly $200,000 PER FARMER) cotton subsidies in the US. Our less-efficiently grown cotton goes to market artifically cheap (and at a great cost to us) so farmers from other countries suffer whose processes are cheaper and whose goods, on the Truly Open market, are cheaper.
    So this idea of “open markets” is a nice idea in theory. Don’t get me wrong, I think it COULD WORK. I’d like to see us actually try it. In practice, the ones in power have the decision as to how free they want their side to be and pick and choose markets to open based on their benefit to the hegemon.
    There, I said hegemon. I’m a radical. But seriously, these few examples are far from secret knowledge. They’re just things that most people don’t put together and consider. The real question is: Free Trade For Who? Right now, it’s us.

  11. Arpita said,

    Hey! I’d like to start off by introducing myself.My name’s Arpita and im a friend of Sarah’s. We study in the same department (in Pune University,India).I’d been waiting for a chance to read some of the posts and it was interesting to read different perspectives. This specific post drew my attention right away coz im working on the project Sarah mentioned. Btw i just wanted to mention that my opinions r based on what i’ve learnt only in the last two odd years,so what ur getting is an unqualified opinion.
    In India,currently the health policy doesnt make any provisions for genetic diseases. Simply because the prevalence of such diseases is very low and therefore it’s not a public health priority. And funds are lacking,so most of the money is spent on prevention and control of infectious diseases. I’m curently working on Hemophilia, an X-linked recessive disorder. In India, treatment is administered in the form of Factor VIII or IX injections, depending on the type of Hemophilia. However these injections are very expensive( in an Indian context, as Sarah mentioned)-about 6000 Rs approximately, per 1000 units of AHF.Here’s how hopeless the situation is-60% of the patients enrolled with the Hemophilia Society Pune Chapter are unable to bear even the expenses incurred while traveling from the remote areas where they reside to a Hemophilia treatment center, much less bear the cost of treatment.Therefore, an alternative treatment method favoured here, is blood transfusions, to supplement the Factor. This as u can imagine,brings in its own set of problems,such as the risk of receiving blood infected with HIV or malaria of Hepatitis(coz screening is often not done effectively).So basically, i feel it’s tough, even for me, being an Indian, but coming from an average middle class family, to comprehend how a poor family with a patient can manage such a disorder. Keeping in mind all these problems, prenatal testing for hemophilia is recommended for pregnant carriers/affected individuals. And if the unborn child is tested positive, many families decide to abort the child. Simply because they have no means to support the child or pay for his treatment so he would die eventually anyway.(Usually boys get affected, females are carriers.) In India, the Medical Termination of Pregnancy Act states that it is legal to abort a fetus if there is substantial risk of it suffering from physical or mental trauma.
    As far as my reserach is concerned,as Sarah mentioned, we are trying to standardise a test ,for prenatal diagnosis of Hemophilia, to offer to patients. This requires determination of sex of the fetus,because only males get affected, females do not. Therefore if it is a female fetus, even if it is a carrier, it is illegal to abort it. In India, because of a high rate of sex selective abortion( female infanticide) , prenatal sex determination is illegal. Therefore we are still awaiting ethical clearance for the project, because the government is extremely wary of granting rights to anybody to conduct sex determination tests(with good reason). There have been several cases of doctors being hauled up and arrested for illegaly carrying out such tests. Therefore such tests are meant to be conducted only in authorised Government Hospitals and by specially trained medical personnel. Anyway, this essentially has made us halt our project while we wait for government clearance.
    To sum it up, even though treatment is available for certain genetic disorders ,say in the US, it’s just not possible or practical to apply the same standards or methods here in India.

  12. msoule said,

    Arpita- I find the attitude that you seem to convey at the end of your comment, well, distressing. In the US and global North, there is a buzzword these days: “sustainability.” Dr Paul Farmer (if you haven’t read his books or papers, ask Sarah and she’ll tell you a little bit about him and I bet we could find a way to send you a book or two) feels really strongly about “sustainability” and “appropriate technology.” He thinks that ideas like this are inherently defeatist. They suggest that good technology ought only to be available to those who can pay for it. Those who can’t are out of luck.
    I see that there are reasons of structural violence that wealth has been withheld and removed from some parts and populations of the world that are beyond their control (see slavery in America or imperialism in India) and that there is absolutely no reason that we should not battle until the end to get good resources to these people.
    Now, Farmer does his work in Haiti. India is 150 times the size of Haiti. The total population of Paul Farmer’s country of concern (and the place that he bases a good deal of his research) is, total, the size of a medium city in India. Delhi, for instance, has a population of 12 million. Mumbai, roughly 16 million. It seems to me that what you’re saying is that there is a big difference between being an economic revolutionary in Haiti and being the same in India. I may agree to some extent with your point that the same standards and methods are not practical but I disagree with the attitude that I percieve underpinning that point.
    It seems to be self-defeating. I understand that “practicality” is important. But simply leaving it at that can’t work. There must be ways to translate this technology to India. You can make pharmaceuticals cheaper by cutting deals with companies or manufacturing drugs generically. There are other ways to translate other good technologies to “appropriate” technology. But there has to be a will.
    I also understand that prevention is important, but giving the excuse that higher standards are not “practical” is defeatist in my mind.
    Yes, the mountain is huge. But if we work together, we can scale it.

  13. Arpita said,

    Msoule- I think u misinterpreted what I was trying to convey. My last sentence was in reference to why the government has stringent rules when it comes to granting permission for carrying out certain tests, for example- prenatal testing and why the ethical standards may be different in India as compared to the US. I was trying to put forward a clearer picture of how there are several ethical, demographic, economic, traditional and cultural influences which have to be taken into context while devising any health policy in India. It doesn’t however mean that the current situation is acceptable to me and that i don’t see the need for strategizing and pushing for changes in the current scenario. I’m just pointing out that the approach has to be different. I wasn’t trying to imply that there is no requirement for upgrading technology or trying to make better facilities available to people who are unable to afford them. In fact it’s quite the opposite. The primary objective of the project that I’m involved in is to develop a reliable and cost-effective genetic test for prenatal diagnosis and carrier detection of Hemophilia and I am working in collaboration with the Hemophilia Federation in Pune, which essentially caters to people who cannot afford to avail of any testing or diagnostic facilities because they are extremely expensive. My point being, that my project is aimed at making a test which is otherwise unaffordable to the masses, available at a nominal cost. So when you talk of there being other ways to translate good technologies to “appropriate” technology, that is something I’m directly involved in and it is the constant endeavor of our department to recognize areas in which there are discrepancies with respect to access to health services, and to work towards some kind of reform. But I do acknowledge that bringing about changes will take time, and until then we have to choose the best alternative available to us. Saying that higher standards are impractical was not an excuse; it was explanation as to why abortion of an affected fetus is even considered an alternative and why it is legal here in India. Until the government is in a position to offer some support to patients, it is one of the few alternatives available for dealing with the disorder. You have to take into perspective how helpless a family feels when it has to support a patient. You have to realize how that desperation can drive the family to do things like abandon an affected baby or disown the mother of an affected child, after blaming her for the “misfortune she has brought upon the family”. I have met families where the parents have to watch their child suffer and die simply bcoz they barely have money to feed themselves, let alone treat the child. Yes, I do agree that this is reason enough for making, better treatment available to such people, our main motive. But until that has been achieved, sparing a family the horror of watching a child suffer and die is, according to me, a reasonable and practical option.
    Let me give you an example- The Hemophilia Federation in Pune is an autonomous organization that works towards providing economic and social support to patients and their families. They receive no financial aid from the government. Zilch. Except for waiver of VAT (value added tax) on AHF that is being imported for treatment. (AHF being manufactured in India is more expensive than that which is being imported coz it is manufactured on a small scale here and therefore cost of production is high). The organization has on a few occasions cut deals with international pharmaceutical companies and received free shipments of drugs. It has relentlessly exerted pressure on the government to recognize Hemophilia as a disability, so that it will entitle patients to monetary and social support under this category. It doesn’t favor or propagate blood transfusions as an alternative to receiving AHF shots coz of the risks involved with the former. What I’m trying to illustrate through this example is that there IS a strong will towards improving what’s available to people right now and I have faith in the ability of the government/ organizations in attaining those goals. I know that there are ways to translate good technologies to make them practical and affordable. And settling for anything inferior is “self defeating”. But offering a practical solution to a problem, temporarily at least, is according to me essential.
    So anyway, I feel like you misunderstood what I was trying to say. On the count of being a self defeatist, I beg to differ.

  14. msoule said,

    Thanks for that fiery reply. I did misread you. I found that among some of the Indian youth I was in class with at St Stephen’s college, there was a sense that circumstances in India were beyond reform. I thought I heard an echo of the defeatism I saw in some of them. I am glad to hear you are on the other side of the spectrum.
    I am curious about a few things:
    What is the interface between your organization and the GoI (Govt of India)? I have read and experienced that the bureacracy is neither efficient nor easy to get around in. What’s your connection with the GoI like? When you say that your organization recieves no help from the government, are you implying that there are ways that you could get this help (in other words, are other organizations like yours that are working on other diseases getting government help)?
    What is the pathway for convincing Indian biotech to produce AHF? Their production of generic antiretrovirals made world headlines and I am wondering what spurred them to do that. Maybe there’s a way to produce similar incentives for AHF? How would we go about finding that out?
    I am glad you gave the response to my comment that you did and I’m sorry if I offended you by suggesting that you are self-defeating. I’m just glad to know that you’re not.
    Also, thanks for joining us! If you would like us to make you an author so you can create your own posts, please let me know.

  15. misarita said,

    May I start by saying that I love both my fiery friends?

    Michael–I’m way ahead of you. Had dad bring Mts. Beyond Mts. when he was here last week and I plan to pass it along.

    Arpita–I’m really glad you’re weighing in, because you’ve seen so much more of this than I have. I know that I’ve said this a bazillion times, but come and write more… we all want more perspective on these issues.

  16. Arpita said,

    Msoule- Hey, don’t worry, I wasn’t offended. I can totally understand why you misread what I had written. The issue is just something I feel very strongly about and that’s why I wanted to clarify 🙂
    About the bureaucracy in India- well you are spot on when you say it is inefficient and frankly quite uncooperative. My association with the GoI, personally, is negligible(This is in respect to academics and research work) .But I can tell you what common notions people have regarding the Govt and for the most part, from whatever I’ve experienced till date, I am inclined to agree. The reason a lot of people feel that the circumstances in India are beyond repair is because honestly, getting any work done here is a huge task and there is so much corruption. And this brings discredit to the few hardworking and motivated people who are a part of the system and do good work. In India, even small things like filling up a form or registering an organization or getting permission of any kind can take ages and requires tremendous amount of patience. You can ask Sarah how frustrating it is to do simple things like paying the college tuition.
    There is a lack of basic infrastructure, coordination, funds and commitment. Government jobs in the health sector don’t pay good remuneration, so employees are not dedicated. It’s hard to explain what is going wrong- coz it’s not just one problem…there are so many factors which come into play. But the underlying problem is that educated, motivated people don’t want to take up govt jobs coz there is no job satisfaction, there is tons of politics involved and there is a very poor work ethic and work environment.
    That being said, I feel that there are people who are committed, people who do not work for incentives and whose sole motivation is improving the health status in the country. For example- I recently visited a primary health centre in a village, some 30 kms from the city where I live, as part of the ongoing pulse polio immunization drive. I came in contact with the Medical Officer in Charge and several health workers and it was quite an experience. I was pleasantly surprised to see how efficient the people were. The health centre was maintained pretty well and the immunization program was executed as planned. And it’s no mean task to operate a health centre smoothly in a village which is still undeveloped in several ways and where a large proportion of the population is illiterate or poorly educated. An example- During our visit, we met a woman who had just delivered a baby. And she was in such a hurry to leave the health centre! The doctor kept insisting and literally scolding her, telling her to wait until the baby received all the medicines required. Ultimately she waited for just half an hour post delivery and then scooted off. It just goes to show what a tedious affair it is for the medical personnel to handle patients.
    Ok I see now that I’ve droned on and on…to answer the rest of your questions-
    The organization my department works in collaboration with (Hemophilia Society, Pune) is an NGO. It is a completely autonomous body. There is always scope for getting govt. help and societies such as this work consistently towards drawing the govt’s attention to diseases which are not a public health priority. But as far as the current situation goes, the GoI offers no help to patients of ANY genetic diseases. In fact there is no mention of genetic diseases in any way or form in the National Health Plan. For other diseases (infectious) there are national health programs which have been operating for years. These programs are involved in control and prevention of communicable diseases and there are surveillance systems in place for detection of cases. Various international organizations like WHO, World Bank provide funding and assistance for implementing these programs. So the govt is accountable to somebody with regards to whether targets are being achieved, where the funds are being spent, whether the statistics show an improvement in disease burden, etc.Thus such diseases are given priority and programs are being conducted relatively efficiently. As far as genetic disorders are concerned, there are no records maintained, no intervention programs, no aid offered, no free treatment, etc. As part of my Master’s dissertation I analyzed and evaluated the services offered to patients of genetic disorders and what treatments options are available. I got the opportunity to interact with the heads of the Hemophilia and Thalassemia Societies and get first hand information on their activities and the problems they face. Once I’ve compiled the report I’ll send you a copy. It basically looks at the problems patients and their families face, the organizations that are involved in providing services to such families and what their demands are, etc.
    About AHF production- I’m aware of 2 companies that very recently started production of AHF in India. One is Reliance and the other one- Ummm I don’t recall the name. The cost of AHF manufactured is approximately 7000 Rs per 1000 units- I’ll have to double check that figure, but I’m definite that it’s more expensive than imported AHF coz its produced on a smaller scale. I’m sure there are ways in which the government can subsidize the cost of the drug or treatment; it’s just that the govt fails to take responsibility of the patients. The disease burden is low, it’s non communicable and therefore it’s not a priority. Until the govt recognizes and acknowledges the needs of patients of Hemophilia, there will not be any scope of offering incentives to biotech companies for producing low cost AHF.
    If you have any more questions I’d be glad to answer them or find out more information for you. I love reading the posts on the site and giving my comments- it’s honestly very thought provoking and stimulating. I’d definitely like to become an author, thanks for the offer. I’m just waiting for some things to clear up at my end so that I have spare time-I’m currently working on my college applications and my mid terms 😦 Once that is done I look forward to putting down some of my thoughts.
    Sarah- I’m glad to be a part of this…you know how much I love to talk and argue hehe.

  17. msoule said,

    You say that there are tons of politics involved in the work you’re doing. Can you tease that out a little bit?
    Thanks for being involved! It’s great to have you here and I’m pleased you’re enjoying it and getting something out of it. Just send me your email address and sign up for a wordpress.com ID and I’ll make you an author and you can post whenever you like.

  18. ketaki said,

    Hi there!!!! Before I start of answering msoule queries abt the political scenario I’d introduce myself. My name is Ketaki, Arpita’s colleague and a frd of Sarah’s. Arpita n I have been working together on the hemophilia project. I’ve been meaning to pen down a few of my thoughts on Sarah’s request but must apologize to Sarah for such a late response. My comments on issues I talk abt here r based on field experience during my college yrs as a health science student as well as a daughter of an army officer where I have had he opportunity to experience the politics at it best n worst.Let me b very honest tht I hardly know anything abt the political scenario in the US. And plz correct me if I comment on something wrong.
    As Arpita has already mentioned the bureaucracy in India is inefficient and frankly quite uncooperative. lets put it this way…politics in India is not merely concerned with providing a better governing body, its abt the monetary gain a political party will receive from his interaction with the illiterate population they target. V r not just talking abt the general politics in India. It all germinates from the ground level governing bodies.as of now i would just like to mention the efficient functioning of the government.
    As u already know tht our hemophilia project deals with the masses and providing them with a diagnostic technique as subsidized rates. Currently there is no government support for any genetic disorder. Not for medicines, case management nor compensations, no mention at all. Since v r talking abt politics I would like to mention tht policies r made only when there is some benefit from them to the government. No government will base a policy solely on the fact tht it is catering to the society and brings bac no revenue. Y is there so much of thrust towards infectious diseases? It’s not because the government has taken its own initiative, it’s simply because they r answerable to the various world organizations which r related to health as well as many funding agencies.if they do not use the funds for infectious diseases they r going to get none.
    The excuse tht the incidence of genetic disorders is low compared to infectious diseases now seems to b a very lame excuse but thts all tht v get to hear from the government. The government has banned the use of expired factor VIII in the case of hemophilia (this expired factor has shown to b efficient in many cases) but then they do not provide any kind of therapeutic supplies for the hemophilia society .i can totally understand tht they r laws n legalities involved in importing the expired medicines but y not allow it in the case of hemophilia when there is no other option for the underprivileged. Arpita has already mentioned the price of factor VIII, this treatment is simply not affordable for many ppl. They just do not have the resources to afford it. Now in case of emergencies y can’t v use the expired factor? The only rationale tht I can think of is the collaboration of the government with the pharmaceuticals and the profit the government makes with these laws. One of the most important politics in play is tht the government fails to recognize hemophilia as a disability. It is not a big task nor r their any gr8 monetary reward for being recognized as handicapped but yes these ppl would b better off with some kind of compensations in various fields. Another issue I would like to mention is tht prenatal diagnosis is an option for these ppl but the government is doing nothing abt it. With all these issues the government has plainly made the life of ppl with genetics disorders a mere note in their “no response agenda” or the “to do” list in the next 10 yr plans.. Hope tht clears a few of ur queries.
    Giving u few examples from the health sector itself – I’ve had the opportunity of observing and interacting with health workers, such as Medical officers, voluntary community workers etc at a tribal village and the PHC. From all the informal talk with these representatives it could b concluded that the supplies for the PHC as well as any improvement in the infrastructure was done just prior to local elections. These changes were temporary lasting only until the politician got his required votes from tht community, after which there were no official visits to the tribal village nor the PHC until the next election yr. The supplies would b exhausted in a month or 2 n the infrastructure back to its wrenched state. Second example would b something v saw n recorded during our interaction with the tribals — the government has a housing plan wherein it offers money along with supplies necessary for a pakka house, oops let me 1st explain wht a pakka house means-a house made from bricks n cement with a tiled roof (total no of rooms-2-3 with an adjacent toilet) the houses in tribal villages r primarily made from tree branches n cracks r sealed using cow dung n mud. The housing plan was implemented in this village as r all the foolproof gol plan but eventually only 3-4 houses were made pakka. Even then the toilets built were not functional as they lacked drainage system n now were used as storage rooms by the inhabitants. In the 2-3 rooms also v noticed the kitchen alongside the cattle shed, the sleeping room (I won’t call tht the bedroom as it showed no signs of being one) essentially this room was bare n barren with the floor of mud and cow dung once again. Is this the idea of the gol of providing services to society? Thirdly there is a provision of supplying these tribals with something called as ration in India where in food grains, oil, kerosene etc r provided on monthly basis at nominal charges but the pit fall here is, tht to utilize this service the villagers had to travel to the ration shop (cost of travel Rs 30-to n fro) the daily income of was just Rs 20.Even after reaching the shop it was impossible to get the full supplies with out a bribe, oh n another thing the bribe doesn’t guarantee tht u will receive every single grain or the liter of kerosene u r authorized.
    Let me get back to the health sector…..the government has put forth incentives for villages which includes that if a pregnant women is going for her prenatal, antenatal checks ups and her delivery is conducted by a trained birth attendant then she receives Rs 600 for her 1st 2 pregnancies .this is a very good approach taken up by the government but the women receive money ranging from Rs 50- 300.hardly anyone has received the proposed amt of money. Why is this the case? Where does the money go? no one is answerable for these questions. I guess if such a situation occurred in the US there would b cases filed and compensations given but this is not the situation in India. The attitude is take whatever u get keep mum.
    Well now if u ask me if anything can b done abt it, I’ll frankly say tht it’s going to take a revolution of some kind to do wonders. But let me also remind u tht the government has shown some insight n has come up with policies for improvement in the health sector but it is going to be a Herculean task getting these across to the majority of underprivileged n illiterate population in India.
    I can state tons of instances where the Indian government has shown its inefficiency as well as many scenarios where they have catered to the needs of the masses.
    I hope I managed to show u a glimpse of the politics involved in not just the health sector but also in every aspect of my “developing” country.

  19. Arpita said,

    Msoule-When I was talking about politics, I was referring to hurdles you tend to face while conducting any study. What I’d personally like, is to have better access to information. Information about ethical issues involved in conducting any study, legalities involved in performing tests, etc. I feel that there should be a prescribed set of guidelines available, so that as a student, I’m aware of what I am allowed to do and who I need to approach when I want to get permission to do it. Out here it takes ages to get things moving. I can totally understand the government’s tendency to be cautious, but I feel like such long -drawn procedures tend to frustrate people. I was so excited about getting started on my project, but now I’m unsure if I’ll even be able to work on it. Coz it seems unlikely that I can complete it within the stipulated time. Which is super frustrating. Anyway, what I was essentially getting at is that there should be a straight forward way by which I can get my work done.
    PS- my email address is diabiswas@gmail.com. I look forward to writing something, that’s hopefully relevant, soon:)

  20. msoule said,

    Ketaki, thanks for the passionate post. Welcome! I can see that you don’t put a lot of faith in your government… here in the academic world in America, India is hailed as the most vibrant, diverse, and populous democracy. What do you have to say about that?
    And do you have any ideas about how to get these government programs to work better? What are the big issues at play? What are the particular things that need to be addressed? Arpita, you ought to chime in on this, too. Bureaucratic concerns are very important to the work that health workers are able to do. This applies to me and my work in the Big Public Hospital as it does to you and your research. I’m not saying that the bureaucratic issues are the same in both places, but they’re definitely worth looking at in both cases.

  21. msoule said,

    Also, if you guys look to the beginning of the dicsussion, there’s a bit about the patriarchy in India. I’d be interested to hear your reactions to that strand of this conversation as well.

  22. ketaki said,

    I am passionate abt this issue because I believe tht India has a lot of potential. If I didn’t have any faith in my government I wouldn’t have talked abt the incentive schemes they have devised so tht more n more rural ppl utilize the health facilities, I totally appreciate tht. From all tht I spoke I wanted to say tht there seems to b a void in our system , they aren’t any standard rules or regulations and even if they exist they r rigid for the wrong reasons. These rules n regulations aren’t really making things easy for the health officials or researchers like Arpita n i.
    India being recognized as a vibrant, diverse, and populous democracy is something this government sud live up to. They r putting in effort, time and money in to the health sector but the turn over is so low. . I mean from my point of view, there r so many changes tht can b brought abt in the ground level itself. I have no clue if wht I’m thinking is realistic or not but yes I think instead of leaving decisions on the local politicians it’s advisable to include public health officials for the execution of policies as well as while making health policies. In recent yrs this has been followed but it is going to take time for the changes to b evident. another fact is tht interference of the gol in every sector which is totally understood but not to the extent of postponing n derailing the strategies as well as hamperinf the functioning of the current health system .I have no idea if I’m making any sense but I feel that the gol is lacks in the implementation of plans…….there r loads of strategies on paper but wht really happens to them at the time of execution is a mystery.
    The government is working to b at par with the international standards n according to me is blindly following the western trends without realizing tht India as a developing country needs a different approach. An approach where in they start from basics improvement of the health sector rather than spending cores on setting up stem cell banks n other state of art technology in the urban sector. The population health needs sud b addressed keeping in mind the monetary gains as last on the priority list.
    I must say tht the government is actually doing a lot for the rural, illiterate as well the underprivileged population but there seem to b many loopholes as well as corruption amongst local n senior politicians is of major concern. Corruption is everywhere n personally I don’t think as a sole individual anyone can do anything to change it, but yes the gol sud have some stringent laws n checks for this, which as of now seem to b amiss.
    Recently the gol has decided to open up more public health schools in the country, its appreciable tht they have realized the importance. Funds have been generated for this purpose n there is lot of thrust in this direction.
    During the recent bird flu epidemic there was chaos n utter confusion in the country. Unauthorized personals were making statement to the media abt the apparent spread n prevalence of bird flu. Due to this the poultry workers suffered as there was mass culling of poultry leading to financial n economic loss for not just the hatcheries but also the economy since export of poultry was barred from India. All this chaos was unnecessary n eventually led to our loss, now isn’t this fallacy on the government’s part?
    A few days bac I had the opportunity of volunteering for the polio immunization program, I was astonished to c the dedication and the zeal with which the medical officer, as well as the health workers carried out the campaign. The scenario was the same at the tribal village PHC and the anganwadi. The doctors and the anganwadi workers r more dedicated than v can ever imagine. According to me these r the ppl who sud b consulted while formulating policies n plan of action for the health sector, instead of the politicians who have never even visited the rural country side.
    I hope u have now got my point ,and the fact tht I still do have tremendous faith in my government but I think they r going to need more time to cope with the situation than v assessed.

  23. Arpita said,

    Msoule- So you asked about the patriarchy in India. I think that Indian society has not entirely broken off from male domination. The social system in many ways reflects trends of male supremacy and society has failed to evolve. Cultural beliefs and customs still pressurize us to conform to traditional gender or sex roles and archaic sex role expectations still exist. Discrimination based on sex is widely prevalent and it is one of the areas in which the govt has definitely tried to bring about some changes.
    In rural India in particular, men are still seen as the bread earners and women are expected to work at home, take care of children, look after the family, cook, clean etc. The social system demands that women be subservient, that they sacrifice their freedom and their goals to take care of the family. Essentially women are subjugated and these sex roles prescribed by the cultural set up serve only to control and limit women. For generations women have been denied many rights and there are many double standards when it comes to the kind of behavior that is considered appropriate and acceptable. People tend to be very hypocritical, for example- for any lapse of conduct, a woman would be condemned but in all likelihood if the offender is a man, it would be overlooked. If women are independent, strong and motivated, it is often perceived as an invasion into male bastion. Educating the male members in a family is considered a priority and men are encouraged to pursue careers. Women are expected to be home oriented and education is often only a criterion which makes them more eligible or suitable as brides. Less often than not, they become housewives and do not pursue a professional career.
    However, I’d like to point out that in urban areas there is definitely a social evolution of sorts, which is underway. There is a growing breed of feminists and the country has seen a subtle but definite change in the psyche of the people. There are certain pockets in the country where a matriarchal society exists(like the state of Kerala and the Khasi hills in the North East).What’s interesting to note, is that these areas show a very high literacy rate, once again proving how important education is and how strongly it can affect the development of a nation. The govt has also developed gender related indicators to assess the status of women and to highlight the importance of addressing related issues. These indicators cover issues such as female work participation and their wages, women’s education, health, survival and their safety-basically areas of gender discrimination. The govt has also introduced schemes and policies like free education for girls, reservation of seats for girls in colleges, etc to encourage women to break free of the bonds that limit their ability to contribute to the economy and growth of the country.
    The govt also has stringent rules with respect to female infanticide and breaking the law in this regard invites severe punishment. The male preference, I feel, can be explained to some degree by the fact that when a girl gets married, the girl’s family has to bear the expenses and is expected to pay a huge dowry to the groom’s family. So having a daughter means additional expenses and since society dictates that she should not be involved in earning any income, she won’t be able to contribute financially. If you have a son, it means that he can work and add to the family income. Let me point out though, that claiming dowry is now against the law, and there have been occasions where people have been arrested for trying to make such demands. But the practice still exists in some rural areas and it is a challenge which the govt is actively engaged in overcoming.
    I think we have “miles to go” before we can say that women in India have equal rights, educational and career opportunities and equal treatment, but we have chosen the road to be “taken” and I’m sure it’ll make all the difference.

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