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:
- Infertility
is not an illness
- Treatment
of infertility is not medically necessary
- Treatment
of infertility is experimental
- 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!
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