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When Pregnancy Dreams Become IVF Nightmares

June 5, 2017 1:23 p.m.

When Pregnancy Dreams Become IVF Nightmares

GUEST:

Jonathan Jones, reporter, Reveal from the Center for Investigative Reporting

Related Story: When Pregnancy Dreams Become IVF Nightmares

Transcript:

This is a rush transcript created by a contractor for KPBS to improve accessibility for the deaf and hard-of-hearing. Please refer to the media file as the formal record of this interview. Opinions expressed by guests during interviews reflect the guest’s individual views and do not necessarily represent those of KPBS staff, members or its sponsors.

In vitro fertilization has made parented dreams come true. Considering how popular and expensive the procedure is, this is not subject to proper oversight. That is one of the conclusions drawn from a study from the Center for investigative reporting. It focuses on the career of an obstetrician who reports success rates from his IVF treatments but may gamble with health and savings.
Joining me is Jonathan Jones from the center of investigative reporting. Welcome to the program.
Thank you for having me.
The Center for disease control has rates. What are they based on?
1992, the Congress passed legislation requiring all clinics to report outcome data of in vitro fertilization which is one of the main technologies that is used to create embryos. It provides statistics regarding a donation but it excludes other treatments such as IUI and other controlled stimulation.
What did you find out about the way doctors and clinics can boost the numbers?
This is the primary tool by which clinics compete with each other. We found out, there are many ways to massage the data admittedly the data. Some doctors reclassify patients as research city do not count against the statistics and they can cancel treatments and do things like banking embryos so you do not have to include those statistics in the success rates. They can push people to IVF who they think are more likely to succeed even if they do not need to do in vitro fertilization. These are ways you can boost your success rate.
You focus on the reproductive center headed by Doctor Salem. He apparently holds an annual gathering for patients and children. You call the center a troubled clinic. Ways that?
One interesting thing about this clinic is that he has been very successful in creating thousands of babies. He is also -- he has been sued 10 times for negligence and medical malpractice. He has had four payouts in regards to the lawsuits. Some of the cases that we are involved in had serious allegations. The one we looked at was a case where he transferred the wrong embryos, a stranger embryo into a woman and then called her and and performed a D&C on her to remove the embryos and she says it was without her consent.
Who monitors the clinics to make sure best practices are followed?
That is one of our findings, there is little oversight of doctors who repeatedly have mistakes. You know, in any other field of medicine, the medical board licenses the doctors but Doctor Salem was still in good standing. The federal government requires you to report your data to them but that is it. Coming, there is a patchwork of regulations. You have the FDA that monitors the labs for STDs and that sort of thing. There are accreditations. You can be members of the professional organization but essentially, there is very little oversight of this field. There are opportunities for issues to be present that the consumer may have no idea about.
How much does IVF cost in California? Back that is a good question. It is hard to put a specific figure on it. The professional industry group says the cost of IVF is $12,400. That is very conservative. That is regarding the IVF procedure. We use the figure $15,000 based on a research. When we are talking about that, we are talking about the actual IVF procedure. It does not include the fertility -- medications and any additional add-on services such as diagnostic testing or other procedures or services that might be used as part of genetic testing or could be part of the treatment. People can end up spending upwards of $15,000-$25,000 and many people go through several rounds of IVF before becoming pregnant.
The success rate, even a successful clinic, if you look at procedures that result in lifers, that is quite low, isn't it?
Yes. We found two thirds of the cycles do not result in a live birth. It is important for patients to understand that even though they are going into this field hoping for a baby at the end of the day, the vast majority of people who undergo IVF will not walk out of their with a live birth from one round of IVF.
Some doctors want to increase those odds. One Doctor in San Diego, Doctor cattle is quoted as saying most clinics and pant multiple embryos because that is what the patients want.
Will I do two embryos?
Yes.
Did I do that this morning?
Yes. Is something we feel like we want to give the patient a major role and that decision-making process. To those patients know they are at risk of having twins? Yes. But do they want twins?
Yes.
What is the health risk involved in multiple implants?
About nearly 40% of all IVF live births are twins. That presents a high risk to baby and mother's. About 60% of twins are born premature. That means they are more developmentally at risk because they are not fully developed. About one out of four are admitted to the NICU unit. Some can develop cerebral palsy. It is higher than if you had a single baby. Twin babies are more likely to be stillborn and experience neonatal death and have for defects and have other complications such as autism when compared with single babies. Just from a mother's perspective, you are twice as likely to have higher blood pressure and develop gestational diabetes which is 1.5 time and -- times higher than a single baby. Like you have a personal reason that led you to do this investigation. Tell us about that.
My wife and I in 2011, we began to try to have a baby and we experienced problems leading to miscarriages and we got on our own infertility journey. We sought treatment. As we were going through the process, we found it very hard to determine the likelihood of success, trying to come up with the money to pay what for and to determine whether it was worth the investment and what type of treatments made the most sense for us at that time and understanding the emotional vulnerability that you feel you have to trust the doctor is giving you good advice. You do not understand this world where there is no real clear answers, especially in regards to the causes of fertility.
After your investigation, do you have recommendations about how the CDC could improve the IVF industry?
We have laid out some different solutions that we use. One thing we think could be helpful is if the CDC improve the way it handles the data and tightens the existing data that they have, right now, the data is self-reported. They are guided 10% of the time. The statistics do not convey the real measures of quality care. We talked about, including more measures of success to you can understand what the patient's diagnosis were and what other procedures that they may have undergone outside of IVF. There are treatments that are not included in the data that is read ported to the CDC. We looked at other countries such as that UK which created their own agency. Basically, what the UK decided was that this is such a nuance field with issue specific to it, they basically created an agency to look at the new technologies and to try to do things like lower the multiple rates and that sort of thing. The earth and we looked at is expanding insurance. One reason why patients and doctors are perhaps doing riskier procedures is because a lot of them are paying out-of-pocket and there is competition. You could, if you expanded insurance combined with oversight, you could reduce the pressures on the patient and the doctors. That could result in better practices embraced by the industry.
I have been speaking with Jonathan Jones with reveal on the Center for investigative reporting. Thank you so much.
Thank you for having me.