Sunday, February 09, 2014

In Focus: The Booming Great Indian 'Egg-Donation' Industry

By Likha Veer | INNLIVE

The death in Delhi has brought spotlight back on the fast rising but largely unregulated egg donation industry in India, riding on lucrative money and word of mouth. 

Among the registrations from 149 countries on a website offering free registration to egg and sperm donors, surrogate mothers and intended parents, the highest for egg and sperm donors — 5,293 — is from India. The second-placed US is way behind, at 1,509. Of the registrations from India, 1,113 are from Maharashtra, 587 from Delhi and 433 from Andhra Pradesh and Karnataka each.
In cities like Delhi and Mumbai or Gujarat where surrogacy is a thriving business, college students, young professionals and mothers in need of money are walking in to donate eggs. A premium is placed on women who are mothers as “fertility” is guaranteed. Another “hot bed” for donors is Indore.

Donors are categorised based on looks, height, educational qualification and, most importantly, fair skin. What are called ‘diva donors’, especially foreign, can earn up to Rs 6 lakh per donation.

The Assisted Reproductive Technology (ART) Bill was drafted in 2010 to govern the grey but thriving area of infertility treatment in India. It has specific regulations on egg donations. However, the Bill has failed to make it through Parliament. In 2010, 17-year-old Sushma Pandey died two days after she had donated eggs at a leading infertility clinic in Mumbai. 

Her death still shrouded in mystery, the Bombay High Court pulled up police recently and, last month, they began fresh investigations. Days after the HC’s reprimand, Delhi saw its first such known death, when a woman died on January 29 in a small IVF (in-vitro fertilisation) clinic operating out of two floors of a building in Lajpat Nagar soon after the first extraction of her eggs.

Pandey and the 23-year-old Delhi woman are the only two known deaths with links to the country’s egg donor industry that has seen a spurt in the past five years. Giving an idea of the numbers, Gaurav Wankhede, director of Becoming Parents, an international company dealing in surrogacy, sperm and egg donation, says: “There may be 50-80 IVF clinics in Mumbai. Every clinic would need at least one donor every week. Every second couple (in need of IVF) requires a donor.” A Vadodara-based doctor talks of a jump of 80 per cent in couples seeking infertility treatment.

Clad in a leather jacket and faded jeans, gold streaks in her hair, the 28-year-old is an event manager with a Delhi-based company. As she replies to emails on her phone, she casts a quick glance at a 25-year-old, sari-clad woman, who keeps checking the sindoor in her hair in a glass wall nearby. Both egg donors, they have been at the Vansh Surrogacy Centre in Gurgaon for the past 10 days. The centre is the mediator, providing egg donors to 15 private hospitals and clinics in Delhi and NCR. Both have been taking injectible hormones to stimulate their ovaries, for which the centre takes them to the hospital concerned.

The event manager says her purpose is altruistic, having seen a friend deal with the trauma of infertility, and the money a bonus. “I heard about egg donation from my cousin, who has been a donor. My husband did not have a problem.”  The 25-year-old, who is from Malda in West Bengal, is donating purely because of the money. Her husband, who worked as a tailor, was severely burnt when a stove in their home burst eight years ago. “He is alive, but only so. I heard about egg donation last year from a neighbour who had undergone the procedure, and came to Delhi for the first time in January 2013.”

She underwent her second egg retrieval on Thursday, earning about Rs 60,000 for the two donations. “If I work as a daily labourer, I will earn Rs 5,000 a month. Instead, I have put my eight-year-old son in school; I want to make him a teacher. I am young and healthy, and if the procedure is done under supervision, there are no risks. The neighbours in my village think I am doing something murky, but I have nothing to hide,” says the woman, adding that her husband and parents support her.

Unlike the West, where donations between relatives and friends are permitted and encouraged, in India, the guidelines and the ART Bill only allow donations where the donor and recipient are not known to each other. According to Dr Neena Malhotra, Professor of Gynaecology and an IVF specialist at AIIMS, “The anonymity clause encourages commercial donation of gametes (eggs and sperms). We have held discussions with the Indian Council of Medical Research (ICMR) as  this is in total contrast to our laws on organ donations.”

Countries like Canada have banned any monetary incentive to donors, while the IVF regulatory body in the UK permits compensation as per loss of pay to the donor because of workdays missed. However, an ICMR official says, it’s wrong to make these comparisons.

“We have a very high population of infertile couples, so we need as many donors as possible. Removing the monetary incentive will reduce their numbers,” he says. In gamete donation, he adds, tests have to be carried out to check for diseases. “If couples do not have to pay a clinic for a donor, or give remuneration to the donor, who will fund these tests?” he says.

Vansh Surrogacy Centre divides its donors into regular, premium and those in between. Dr Priyanka Satija from Vansh says, “If there are specific requirements, like the recipient wants a very tall or fair donor or a foreign donor, we have to look at our premium list.”

A regular donor gets about  Rs 30,000-35,000 per procedure here, while those in the premium list draw Rs 50,000-60,000.

Dr Satija claims to have an MBBS graduate, airhostess, and young entrepreneurs in her donor registry, running up to 100-150.

The Vadodara-based schoolteacher was just 24 when her husband died four years ago, leaving her with two daughters, aged 4 and 2, to raise, and a home loan of Rs 7 lakh to pay off. She earned  Rs 7,000 a month. “It was five months after my husband died that I had to make a choice. That is when my friend, who had been a surrogate, suggested egg donation. At first, I felt I was betraying my husband, but the doctors explained that it did not mean I was going to be ‘impure’. And my identity would be a secret,” she says.

In October 2010, she was tested and handed over dates for  fertility drugs she was required to take everyday, many intravenously. She was worried, as the first time was painful, leaving her confined to bed for three days with severe abdominal pain, fever and vaginal bleeding. But within a week she was able to return to her job, richer by Rs 40,000.

Now she donates every two months — that’s the gap she has been advised by her doctors — and is on the list of regular egg donors of an IVF clinic in the city. Each sitting, in which up to a dozen of her eggs are retrieved, gets her around Rs 1 lakh. “My doctor says the success rate of my eggs is high, which is why she is willing to pay me more.” 

While she has put on 20 kg since she began donating and now has mood swings, she points out that the home loan is paid off and she is saving for her daughters’ education. “I’m getting a good price for a commodity inside my body,” she justifies. Her eggs have led to 17 births since 2010, she adds. Two embryos are in gestation currently.

Registered with a well-known IVF centre in Ahmedabad, the 23-year-old lives in Maninagar with her plumber husband and three-year-old child. She donated for the first time in 2012 through a nurse, and was paid Rs 10,000. The first two days were “very painful”, but she is ready to donate again. Except her husband, she hasn’t told anyone in her family about the egg donation. She makes the rounds of the hospitals alone though as he is not too happy about her decision. “He grumbles, says it is not right. We don’t have a house, that is why I am doing this.”

Dr Nayna Patel of Akanksha Infertility Clinic in Gujarat’s Anand, which claims to be one of the most technologically advanced ART centres in the country, says that it is a myth that only poor women get into egg donation. “I also have women who are bankers and high-ranking executives. But we make sure that the woman is counselled and understands that it requires taking injections for 10 days. We take appropriate care and discourage young girls coming forward to be egg donors. It is best to take in a woman who has at least one child of her own,” she says.

Dr Satija prefers married donors with children, who are around 30 years of age, “because their fertility is established, and there are no qualms about the donor’s ‘virginity being lost’ during the egg retrieval process”. “While it is true that many women donate for financial reasons, the image that they are poor, ignorant, exploited is absolutely false. Women come forward with nuanced queries before donating,” she adds.

However, the 25-year-old donor from Malda at her centre says the only precautions she was told to take were to rest and avoid sex during her injections. “I was told I should not walk or do strenuous activities, and I should not eat very spicy food,” she says. She does not know of complications like hyper stimulation or “such terms”.

Donors at the Delhi clinic where the 23-year-old died on January 29 are not aware of the incident. “She must have had a disease, otherwise they would have told us. The lady here is nice, she has told us to relax, and the money is also good,” says one woman.

In the absence of a law, IVF clinics that provide treatment and ART banks that store donated gametes are meant to only adhere to the guidelines put together by the ICMR. These say the donor should be in the age group of 21-35, and a single person should donate a maximum of six times, with minimum three months between every donation. 

But as many doctors point out, the guidelines are ethical and legal, not clinical — they do not specify the dosage of hormones or the number of eggs that should ideally be retrieved in a cycle. “Most of these agencies prefer younger donors below the age of 30, and the risk of ovarian hyper stimulation is higher in younger women,” says Dr Suvreen, IVF expert at Max Hospital in Delhi.

The Mumbai girl who died, Sushma Pandey, was 17. As mother Pramila notes, she was “healthy” and “fair”. She was tapped by an “agent”, Noorjahan Munir. In a statement given to police, Munir said she had befriended the teenager on a local train, and the latter had told her she had undergone an abortion earlier. That made her a lucrative donor as it showed her “fertility”. Scouting for donors is outsourced to “agents” by a majority of the hospitals in Mumbai. “There are medical social workers who bring interested women forward,” says Dr Kedar Ganla, IVF specialist at the Hiranandani Hospital.

“Most agents are ex-donors or ex-surrogates. For every donor registered through him or her, the agent gets Rs 10,000-15,000 from a clinic,” sources said. Munir had taken Sushma to Rotunda Centre in Bandra thrice before her death.  In a report submitted to the Bombay HC last month, a panel of state-run J J Hospital doctors said Sushma had died as a result of “brain haemorrhage and pulmonary haemorrhages due to ovarian hyper stimulation”.

While a healthy woman produces a single ovarian follicle that matures into one egg every month, doctors give injections known as Gonadotrophins to egg donors to stimulate their ovaries to make more eggs. These are retrieved after they mature, under anaesthesia, through the vagina.

Critics say that the revised ART Bill guidelines barely touch upon the risks involved. “The use of superovulation for ART entails a risk of hyper stimulation in some women, in the range of 0.2 to 8 per cent,” say the guidelines. A high dose of hormones can lead to the hyper stimulation, which can be life-threatening. “There is no Indian  data to establish the rate of such complications. But according to incidence of hyper stimulation in international publications, mild to moderate can happen in 5-7 per cent cases. 

The severe one is in about 1-3 per cent cases,” says Dr Sohani Verma, in-charge, IVF lab, Apollo Hospital in Delhi. Organs around the ovary, like the fallopian tube, ureter or the intestine, can also get injured during retrieval. But there is no data on such incidence in India.

As per protocol, a prospective donor should be put through psychological counselling — by the donor agency or bank, then by the clinic or hospital treating her. If she has a partner, he should be consulted too. The donor is then screened for infectious diseases and some common genetic disorders like Thalassaemia. “The dosage of hormones is identified on the basis of the body mass index, hormone levels, ovarian reserve etc. A donor of an average height or weight is started on the hormones on the second day of her menstrual cycle, the retrieval is conducted between the 12th and 14th day,” says Dr Suvreen.

Doctors say eight-12 eggs should be extracted, stretchable to  18. “But since there is no monitoring of records, people extract as many as 50 eggs at a time, and share the eggs between recipients,” says Dr Malhotra from AIIMS.

As per rules in the UK and US, if a woman produces more than 20 eggs in a cycle, and shows excess of hormone levels, the cycle has to be cancelled. “If I tell a couple the waiting list is two months, and a neighbouring clinic says they can provide a suitable donor within 15 days, will they wait? So we sometimes share eggs extracted from a donor in a single cycle — the ICMR guidelines permit that — provided we are able to extract at least 14 eggs. We are not doing something illegal,” a gynaecologist at an IVF centre in Delhi says.

With recipients listing their requirements such as height, skin tone etc, many agencies which offer egg donors  have tie-ups with international donors, or offer Indian donors to couples abroad. “We get requests for Chinese, Nepalese donors. Recently we got a request from a Nigerian couple who wanted a fair baby. We take consent from patients that their baby may look different from them,” Dr Priyanka from Vansh says.

Mumbai doctors talk about a significant demand for Caucasian donors given the emphasis on fair skin. Owing to their physical resemblance with Indians, Mexican egg donors too have a demand in India. The money paid to these donors includes travel and accommodation expenses.  Anand’s Akanksha Infertility Clinic markets itself to “international patients”. The clinic’s website says it works with a bank of “national and international egg donor agencies, including Caucasian and Thai egg donors”.

Dr Patel says having a bank of Caucasian and Thai egg donors was essential given the demand from foreign couples commissioning surrogacy in India. She believes that ICMR guidelines are lucid enough. “Once these guidelines ultimately become the law, it will keep a check on clinics,” she says.

Many also look for a donor who resembles the mother so as to hide the fact of an infertility treatment. Mumbai-based lawyer Shivani Shah, specialising in medico-legal cases, says, “In some cases, the intended parents are shown the picture of the donor but her name and other information is withheld.” ICMR authorities say irregularities are happening since hospitals and clinics have started operating like ART banks, supplying donors and storing gametes. 

According to Dr R S Sharma, Deputy Director General, Division of Reproductive Medicine, ICMR, who has been involved in the drafting of the ART Bill, “Once there is an ART Act, IVF centres and hospitals cannot perform the role of banks. This has led to the malpractice of middlemen getting involved.”

A Delhi-based couple undergoing treatment at an IVF centre in Gurgaon say, “We paid Rs 3 lakh for a donor egg cycle. We don’t know how much the donor or the agency was paid.”
Dr Malhotra from AIIMS notes that there is no check right now that donors are being tested for diseases, including genetic disorders. 

The other loophole is that while hospitals and clinics cannot advertise for donors, ART banks or donor agencies are permitted to do so. Dr Anoop Gupta of Delhi IVF & Fertility Research Centre says this has created more problems. “Earlier hospitals could directly deal with donors. Now there are middlemen and touts. Women who have donated once are going and opening agencies, as they see this as a business option.”

While advertisements for egg donors are usually placed in magazines widely read by women, newspapers or Internet portals, the reality is that many centres say they don’t even need to advertise, such is the rush of donors. Since 2012, when the ICMR opened registration of IVF clinics and banks, 185 clinics have been “confirmed”. The registration process includes inspection by ICMR authorities. 

“After we have the database, we will ask clinics for records to analyse incidence rates of ovarian hyper stimulation, and other complications. These are our first steps at bringing a regulatory network, so there will be some baby steps, some hiccups, but we hope to bring together this scattered IVF industry under one framework,” Dr R S Sharma says.

Dr Parul Katiyar, an infertility expert at Fortis Hospital, Gurgaon, says, “The ART Bill should be passed at the earliest so that there is a regulatory framework in place. Many women donate for a variety of reasons, obviously mostly financial. Our job as doctors is to ensure that they do not put themselves in any position of risk.” 

The event manager waiting to donate at the Gurgaon centre believes lifting of secrecy should be the first step, as people would be ready to discuss matters. The woman from Malda sharing the centre with her is thinking of surrogacy next. “That means staying here for nine months, and I don’t know if I can leave my son for so long. But the money is better.”

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