Chapter 39
Rights of the Infertile Couple - and What Society Needs to Do About Them

from the book How to Have a Baby: Overcoming Infertility
by Dr. Aniruddha Malpani, MD and Dr. Anjali Malpani, MD.

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The right to have a baby is something most of us take for granted , and we often lose sight of the fact that 1 in 10 married couples will not be able to have the child they want. Infertility is a very common problem , and if you stop to think about it, you will realize that you know at least one person who is infertile amongst your own group of friends or relatives. However, it remains one of those taboo topics which no one wants to talk about, even though it interferes with one of the most fundamental and highly valued human activities - building a family.

Millions of infertile couples in Indian cities today face many obstacles in their attempts to build a much-wanted family, and one of the most frustrating is the lack of insurance coverage for medical treatment. What this means is that while infertility specialists in India can provide even the most advanced reproductive techniques to solve extremely complex infertility problems, at a level of sophistication which is comparable with that in the West ( and at a fraction of the price ) most couples cannot avail of these techniques because these are not covered by their insurance policy. So near - and yet so far , would sum up the situation for most couples! The financial burden that some of the treatments may place on couples can be large, and adding this on to the emotional and physical consequences of experiencing infertility can literally be the last straw which breaks the camel's back. The strong desire to build a family gives many the strength to face these obstacles, but infertile couples also need additional support from their employers and insurance companies!

While most diseases and medical conditions are covered by insurance, the disease of infertility is often singled out for exclusion, and such discrimination is unfair! Thus, to add further insult to injury, infertile couples not only face the emotional pain associated with not being able to have a child, but also face obstacles put in front of them by their health insurance and employers for reimbursement of the medical expenses they incur on their treatment!

Unfortunately, insurance companies in India still do not provide health insurance coverage for infertility. This is a very archaic attitude, but because the insurance industry in India is still a monopoly, this situation is unlikely to change, until the field gets privatised, or Indian companies fall in line with their Western counterparts.

Insurance companies have traditionally denied claims for infertility on one of the following flimsy pretexts:

1. Infertility is not an illness
2. Treatment of infertility is not medically necessary
3. Treatment of infertility is experimental
4. Infertility treatment is too costly for a country like India to offer

However, it has now been well established that infertility is an illness, which is caused by various medical causes which result in the abnormal functioning of the reproductive systems (such as blocked fallopian tubes or a low sperm count); and that these can be successfully treated in most cases. Medically necessary is usually defined by insurance policies as medically appropriate for treatment of an illness under professionally recognized standards of health care - and treatments such as GIFT, IVF, and ZIFT are now universally acknowledged to be standard medical treatments, which are no longer experimental. While certain infertility treatments can be costly, most are quite inexpensive, and only about 5% of all infertile couples will need expensive treatments like IVF. Moreover, if expensive medical procedures like bypass surgery can be covered, then why should treatment for an abnormally functioning reproductive system be excluded?

Why this discrimination against infertile couples in India? Ironically, this is because of the high premium Indians have always placed on the family unit! The major role of the woman in Indian society was seen to be to have children to propagate the family name. Therefore, if a woman could not have children, she was singled out, ridiculed, ostracised and stigmatised! In fact, given the value Indians have placed on having children, infertile couples should actually receive even more tender loving care from others - and be helped in their quest to complete their family! However, because of centuries of misconceptions and myths regarding infertility (for example, "a barren woman has been cursed by God , and being punished for the sins of a prior life"), it will take a long time for social attitudes in India to change! Infertile couples are an easy and soft target for everyone - ranging from:

• friends ("life is incomplete without a baby!")
   
• in-laws ("when will I become a grandmother?")
   
• relatives ("what do they want to earn money for - they do not have any children to leave it to!")
   
• neighbours ("they may have a lot of money, but what's the use, they don't have any children")
   
• acquaintances ("no good news yet? Go see this doctor my sister-in-law's cousin went to - he's the best!")
   
• co-workers ("you don't have any kids, so can you stay on a little longer to finish this job - I need to go back to take care of my children!")
   
• right to servants (" the reason she shouts so much is because she doesn't have any children - serves her right!)

(Gentle reader, if you recognise yourself here, please suffer a pang of guilt, and promise to improve your behaviour the next time round!)

Many otherwise enlightened people take the attitude that infertility treatment is elective - and even compare it to cosmetic surgery! However, infertility is a serious medical condition - it is both a disease and a life crisis! Others pontificate that these couples should just adopt a baby, rather than take treatment. While adoption is an excellent method of building a family for some couples, it is not acceptable to everyone- and forcing couples to do so when they don't want to is very unfair.

A major problem is that infertile couples in India are too ashamed to stand up for their own rights - with the result that they often suffer in silence! However, infertility exacts a high toll! Not only do many marriages break up, many women are abused for being infertile as well. Also, infertile employees, because of the emotional stress they are under, are often not as productive in the workplace as they could have been if their problem was successfully resolved.

Fortunately, this discriminatory attitude is now being challenged by advocates for infertile couples - at least in the US! The pathbreaking Americans with Disabilities Act (ADA), provides protection against discrimination for Americans with a disability - a disability being defined as" a physical or mental impairment that substantially limits one or more major life activities." The US Supreme Court has clearly ruled that reproduction is a major life activity. Since infertility is a physical impairment that substantially limits the ability to reproduce, this means that if an individual experiences discrimination because of his or her infertility, a claim can be made that this is illegal under the ADA. Thus, a police woman employed by the city of Chicago sued the city recently because it did not provide infertility insurance coverage. The Court ruled that infertility is a disability under the ADA, and today the city of Chicago covers the cost of infertility treatment incurred by all its employees!

Many employers in India are not still aware of the issues and concerns facing those with infertility. Employers need to be more understanding of the special needs of those of their employees who are infertile, and be willing to make workplace accommodations for those undergoing infertility treatments - for example, allowing the employee to change her work schedule or to take some time off. Employers, insurance companies, and legislators in India also need to take steps to recognize that reproduction is a major life activity - and that infertile couples need all the help we can give them!

Unfortunately, most infertile couples in India do not feel comfortable speaking publicly about this very private struggle, even though they represent all racial, religious, socio-economic and ethnic groups, as well as both sexes. Infertility Friends, India's first support group for infertile couples, plans to actively lobby for recognition of infertility as a medical problem by insurance companies to enable members to benefit from Mediclaim and other medical insurance facilities.

We all need to remember that infertile couples are our neighbors, co-workers, friends and relatives - and they just want to experience the joy of raising a family - an experience that so many of us take for granted!

by Dr. Aniruddha Malpani, MD and Dr. Anjali Malpani, MD.

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