by Patricia Mendell, LCSW
Wouldn’t it be wonderful if there was one Global Navigation System (GPS) for IVF (In-vitro Fertilization) programs? It could make the experience faster, simpler and more accurate. You would never fear that valuable time would be lost as your biological clock ticks away. But as we all know, not all GPS systems are created equal nor do they give the same directions for the same destination. What may be the answer for one patient may not be the solution for another. While having so many choices can be wonderful, a new set of problems may appear on your road to becoming a parent. And to complicate matters even more, what’s best for one patient may not meet the needs of another, making it difficult to select a program or decide to change to another. Often, patients wish that they would have asked more questions prior to selecting their IVF program; resulting in a different outcome that better meets their individual needs. So, what are the questions that a patient needs to consider when selecting a program?
While no one hopes to need IVF to have their baby, there is a belief that IVF, no matter what your age, will succeed in getting you pregnant and taking home the baby you so desperately want. In 2007, the University of Aberdeen in Scotland conducted an online study of 700 women who were divided into two groups; one half had become pregnant naturally and the other half were being treated for infertility. Participants were asked about how age impacted fertility. Over 90% of the participants believed that women should be informed of the implications of delaying childbearing at an early age and that age increased the risks of babies with chromosomal abnormalities. But despite their awareness of the impact age had on fertility, 85% of those undergoing infertility treatments and 77% of the pregnant women expected IVF to overcome the effects of age.
Questions to ask
For many undergoing IVF, their fertility issues are not clear. Even if a man’s sperm is “good enough” to undergo IVF, there is still a male factor problem that affects the couple’s fertility. Even if a woman has a normal FSH at age 40, or even 45, that does not mean that there are no fertility problems. Age is a major factor that will often affect the success of the fertility treatments more in women, but also with men.
Other issues include: scarring in her uterus; polyps; fibroids; endometriosis; a misshaped uterus; blocked fallopian tubes; fluctuating follicle stimulating hormone (FSH); Polycystic Ovarian Syndrome (PCOS); a low resting follicle count; and poor Anti-Mullerian Hormone (AHM).
The male partner may present with a male factor problem, including: varicocele (single or bilateral); testicular problems; former cancer or prostate problems; or genetic issues. These male factor problems can effect a man’s ability to produce sperm, as well as the sperm count; the morphology of the sperm; the motility; all resulting in the ability of a man to be able to fertilize his partner’s eggs.
It is always helpful to keep a copy of your previous medical records; updating them after each procedure has been completed. Also, keeping the original or making copies of any diagnostic ultrasounds are important since many physicians or programs may require these tests to be redone if they do not see the actual films from the procedures.
Program Specific Questions
Age, Sex and Marital Status
• Are there age cutoffs for women undergoing IVF with their own eggs? For men?
• Can a man and woman undergo IVF if they are not married but are a couple?
• Will the program treat single women using donor sperm?
• Will the program treat a lesbian couple, where one is sharing her eggs with her partner who will be carrying the pregnancy?
• Will the program treat a single man or a same sex couple, with two men using an egg donor and a gestational carrier?
If your current physician is part of an IVF program you should sit down with him/her to discuss your questions about IVF, and how it works at that particular program. If you are exploring IVF programs and hope to cycle in the up-coming months, there may be a wait of up to 3-4 months to meet with a specific physician at that program to start the process. Some programs will require that you fill out a questionnaire, get your previous medical records and possibly do a day 2/3 blood test following your period, before being placed on the schedule for an IVF cycle.
• What does the IVF program consider too high an FSH or estradiol level that would preclude a woman from cycling with her own eggs?
• If the woman has fluctuating FSH and estradiol levels, will the program be open to cycling her with her own eggs if her levels are normal for that month?
• Will a program cycle a women with her own eggs regardless of her FSH/E2 levels, if they are aware of the low chances for success, but need to feel that they have tried IVF?
It is important to ask what tests are required for an IVF cycle for the woman and/or the man. Some tests may be specific to that program, while others are required by the FDA.
Testing required for an IVF cycle may need to be repeated, depending on the expiration dates of the tests as established by national guidelines. Ask about expiration dates and plan your cycle around these dates in order to avoid extra testing and costs. If you are transferring to another program make sure that you get your records with all tests results in order to avoid extra costs and unnecessary testing. Previous failed cycles or specific genetic markers may require genetic testing to be done by IVF candidates for the next IVF cycle.
Decisions about fertilization will be influenced by the sperm analysis results. If the male partner has not had a sperm analysis or it has been longer than a year, the IVF program may require a repeat sperm analysis prior to the beginning of the cycle. Some programs will require a new analysis to be performed regardless of when it was done, if it was not done with that specific program’s andrology lab. Any health issues with the male partner will also require a new analysis. A current sperm analysis plays an important role in the treatment plan for all treatments, including the IVF cycle.
If a man has any concerns about being able to produce sperm on demand at the time of the retrieval, it might be suggested that he store his sperm in advance of the retrieval, as a precautionary measure. This is also a good idea if the man might be unable to be present at the retrieval.
Women with current or previous medical conditions will often be required by their IVF program to have medical and obstetrical clearance before beginning an IVF cycle. Routine GYN tests and mammograms for women over 40 may be required and will delay a cycle if they have not been done and results received by the IVF program prior to the cycle commencing.
Costs and Insurance Questions for IVF
Costs of an IVF cycle vary from program to program. Fertility coverage can range from being non-existent to fully covering all procedures. It is not uncommon for insurance companies to cap their fertility coverage with: age restrictions, a certain number of specific treatments, or a set dollar amount. Often using a donated egg/sperm/embryo or gestational surrogacy (the need for another person to carry your embryos) may not be included in what is considered “reasonable and customary” or covered costs.
Ask to meet with someone in the financial department for help in understanding which medical codes are required from your insurance company. Make sure, if at all possible, to get a pre-authorization for what they agree to cover and not cover. Getting pre-authorization for coverage is important since some insurances will not pay if this pre-authorization was not in place prior to the procedures being performed. Also, find out whether you are in- or out-of network for your policy as this can affect coverage for some procedures. If unexpected procedures are later performed, you may need to ask the finance department to help you petition your insurance. Ask for a written agreement regarding when cycle fees must be paid, since your cycle may be canceled or delayed if you cannot, or do not, pay your bill. Each program will require that payments for the IVF procedures be made in advance of the beginning of each cycle. Most programs accept cash, checks, credit cards and some insurance plans. Ask about any refund policies if the cycle is canceled or changed.
It is not unusual to have an insurance company cap their fertility coverage as “lifetime attempts”. This means that if you spend $10,000 with one insurance company, the new company will not have to fund your fertility because you spent that amount with the other company. Also, if a company has a 3 cycle lifetime limit and you have already done 2, they will only cover one more. While this was not true in the past, it has become the new norm.
It is not unusual to have a price quoted by the IVF program that does not include such costs as:
• the initial consultation with the doctor
• pre-IVF blood and lab tests
• diagnostic tests for the woman
• sperm analysis
• injectable and non-injectable medications
• injection teaching class
• operating room fee
• endometrial or testicular biopsies, etc.
At the time of the IVF retrieval, the embryologist may perform procedures on the embryos that were not included in the price quote, such as:
• cryopreservation of the embryos
• assisted hatching
• cryopreserving the embryos
• co-culture and PGD/PGS etc.
Find out if the IVF program has any trial programs which might allow you to qualify for having part or all of your cycle covered. Since medication prices can vary tremendously, check different pharmacy costs. Find out whether the pharmacy that you plan to use has home or office deliveries and how much notice you will need to give them to get refills on your medications. It is not uncommon for patients to limit the amount of the medications they buy in the hopes that they will not need as much medication. Plan ahead with your medications since you may not be able to order more at the last minute.
Pregnancy success rates are not take home baby rates. Many patients don’t want to ask the tough question, “What are my chances of going home with a baby? “. Remember, if the chances are 30% for a take home baby, then there is a 70% chance it will fail. For women who are insistent that they continue being treated after forty-five, it is important to ask the IVF program or physician how many women have been treated, and, how many have ended up getting pregnant and successfully come home with a baby.
For further information on official success rates for each program can be checked out at www.sart.com.
The problem with these statistics is that they only tell part of the story of a program’s success rates. It does not indicate whether patients in a particular age group have had repeated IVF failures or whether there are extenuating medical issues for certain patients that cycle in certain categories. Yet, it is helpful for patients when speaking to an IVF program, to know their official statistics and to ask questions about their successes and failures.
IVF treatments do not come with guarantees. Sometimes a poor response to the medications may result in a cycle being canceled only days before a retrieval resulting in a costly cancelation; changing a retrieval into an insemination. While it is not usual to have to undergo more than one IVF cycle to achieve a pregnancy, the patient may not be able to afford more than one cycle. Patients need to be clear with their physician and IVF program about their financial limitations. Age can often play a major role in canceling a cycle, but it is not the only factor. Sometimes, the decision to continue on and just do a “wait and see”, is a discussion that should be made with the physician and recipients, particularly since many patients have limited financial resources. Cancelations in each program can range from 10%-30%.
Often the day of transfer is both exciting and overwhelming to patients. While patients can have as many as 20 eggs retrieved, they may find themselves with only two or three quality embryos on the day of transfer. While many physicians have shared that this would be considered a good outcome, many patients find themselves feeling that they should transfer more embryos to assure a successful outcome. Discuss the number of embryos to be transferred and the implications for a multiple pregnancy before the day of the transfer. Prior to the day of transfer, discuss with your doctor when you will know what embryos, if any, have been frozen for possible future cycles.
Ask about pregnancy reduction (multi-fetal reduction/selective reduction) if you become pregnant with a multiple pregnancy. Reduction does not occur before ten weeks. It is not uncommon to have a heart beat and find, at ten weeks, that a twin or triplet has stopped developing (vanishing twin or triplet). If there is a risk to the mother due to a multiple pregnancy then termination can be considered. Patients need to discuss their feelings openly with their physicians from both a moral and religious point of view before doing an IVF cycle.
How many IVF cycles does the IVF program perform a year overall and in your age group?
• Does the program rate your embryos? What is the rating scale? What makes an embryo have a higher grade than another?
• Given what they know about your fertility issues (first time IVF, repeat IVF, previous IUIs with medications, age, etc.) how many embryos would the program routinely transfer back into your uterus?
• What is the difference between a day 3 transfer, a day 5 transfer and a day 6 transfer? How do they decide which to do?
• How often are transfers done on Day 3 versus Day 5 at this program?
• Does the program offer single embryo transfers?
• What are the most recent pregnancy rates and take home baby rates for your age group and the number of embryos transferred back?
• What are the percentages a multiple pregnancy; twins versus triplets, or more?
• How many frozen cryopreserved cycles does an IVF program do each year? What are their success rates per embryo transfer?
• Given age of cycling patient and partner’s fertility challenges, what is the percentage of women who have frozen embryos from one IVF cycle?
• Can patients request how their embryos are frozen; one per stem, two, three or four, etc?
• What are the pregnancy rates and take home baby rates per embryos transfer for your age group?
• What are the differences between slow-freeze cryopreserved embryos and vitrification embryos? Does the program recommend one technique over another? Why? What are their success rates for each?
• What stage are embryos routinely frozen (day 2, 3, 5, or 6)?
• What is the difference between Pre-genetic Implantation Diagnosis and Pre-genetic Implantation Screening?
• Why might it be recommended?
• What are the differences in testing one cell versus many?
• Does the program permit sex selection for personal preference? Family balancing? Genetic issues?
• What are the costs for this screening?
• What genetic tests are required prior to the cycle beginning and why?
• Do you meet with a genetic counselor prior to genetic testing?
• When can these tests for genetic disorders be performed? If these tests are performed during the cycle will that impact when embryos will be ready for transfer?
• How many of these procedures have resulted in a take home baby?
Who discusses the consents for your IVF procedure with you? Often, couples are given consent forms and asked to follow-up with their nurse. Look over the forms prior to the retrieval and transfer, and ask to meet with your nurse or physician to discuss any questions that you might have concerning the various procedures being proposed, such as: the retrieval, anesthesia, sperm analysis, ICSI, assisted hatching, cryopreservation of the embryos, and PGD.
Cycling and your workplace
IVF programs can have set times for doing their cycles. Some will be open 365 days a year while others may have specific times when they will not do cycle monitoring. Some programs will designate certain cycle periods for more complicated cases. For some patients, the times that might work for them to avoid extra days off may unfortunately not coincide with program closings over many holidays.
For patients who have been using injectable medications prior to their IVF cycle, the stress of the cycle may feel less intense. Most IVF programs require an injection teaching class for all patients who are first time cyclers with that specific program. While the class is often scheduled in the middle of the day, requiring time off from work, it is often helpful even for the most experienced cycler. For a couple, taking the class together can help them feel like they are on a team since timing is everything.
• What hours are monitoring done at the IVF program?
• When do they start the monitoring and how long once you are signed into the program will it take to get your ultrasounds and blood work done?
• When will the program contact you later in the day with the cycle blood work results?
• How will they contact you? By phone, e-mail or cell phone?
If your work starts early, are you comfortable telling your boss about the cycle and your need for time off or being late on several consecutive mornings? Many women express their reluctance in telling their bosses because they do not want others to know about their fertility issues or they feel that there will be a bias against them because they will be taking time out of work once they are pregnant and have children. For women or spouses with jobs that demand late hours or traveling, plans will need to be taken into account since nightly and sometimes morning injections must be given at specific and consistent times making outside plans almost impossible. Patients also need to consider that retrieval will require the woman to take the entire day off; requiring someone to be with her to accompany her home.
Exact times and days for egg retrievals and embryo transfers can never be planned more than 2 days in advance due to the inexact nature of ovarian stimulation and embryo development. Delays due to medication responses, as well as, decisions about embryo readiness for transfer, can alter any cycle by more than a week or two. I had one woman who was asked by her boss whether she could bunch her medical visits together so as not to have the disruptions at work. While this question is illegal it is not unusual from the non-medical community.
Coordination of the IVF cycle
• What role will your physician play in the IVF cycle?
• Will he set the protocol for your medications?
• During the IVF cycle will you be able to speak to your doctor directly if questions come up during the cycle?
• Will your doctor communicate by telephone, through his nurse or by e-mail?
• Will you see your physician when you do cycle monitoring exclusively or will all the physicians in the program rotate the morning monitoring?
• Will your physician perform your retrieval or do your transfer? If not which doctor’s do retrieval and transfers?
• Request to speak with the physician performing the retrieval before and after the procedure is done.
• Will you have a specific nurse assigned to your case or will the nurses be rotated?
• Can you contact your nurse with questions by phone or e-mail?
• What hours are monitoring done at the IVF program?
• When do they start the monitoring and how long once you are signed into the program will it take to get your ultrasounds and blood work done?
• Who will call each day with morning blood work results and think about whether you want to receive the call on your cell phone, at home or have your spouse answer the phone calls.
• If you have questions or if you cannot pick up these calls find out who will be available if you need to call into the program with questions?
Day of the retrieval
• Ask about the anesthesia, how it is given and alert your doctor to your past anesthesia experiences.
• Can you speak to the anesthesiologist prior to retrieval if you have any questions?
• Ask to meet the doctor performing the retrieval before and after the procedure.
Days after Retrevial through the Transfer
The day after the retrieval it is common to receive a call from a nurse about how many eggs were fertilized. Since the embryos are continuing to develop, it is not uncommon to find that on the day of transfer that the number of embryos available for transfer may be dramatically different from what was initially fertilized. As one reproductive doctor said to me a number of years ago, “Human beings are an inefficient reproductive group. We can make many eggs and even many embryos but have only a small number that are viable.” While patients are often tempted to transfer back more embryos than they had previously decided prior to retrieval, it is important to again review the realities of multi-fetal reduction.
• Ask when you will know if you will have frozen embryos from this cycle?
• Ask when you will return for a pregnancy test?
• Ask when you would be allowed to cycle again if the cycle fails?
• Ask who will be calling you with the cycle results? Often, patients are not informed by their physician about the cycle, but by an IVF nurse. While receiving good news can be exciting, bad news can often be upsetting when it is given by the nurse and not your physician.
Often the full explanation for why the cycle failed cannot be given at that moment since the IVF team which includes the physician, embryologists, and nurses will need to review the results of the cycle.
IVF can be helpful in diagnosing both egg and sperm issues, but it is not without limitations. What is difficult for patients in selecting an IVF program is that there is no one right way to do IVF. The best program is the one that will get you pregnant and help you bring home a baby. Each choice involves a “leap of faith” which can be greater or smaller in its outcome. There are always new advances being made in the field of reproductive medicine which makes decision-making in this field so difficult. If “your answers are only as good as the questions that you ask”, then educating yourself as a ‘patient consumer’ is vital to getting the best out of your care. While programs that cycle large numbers of patients have more experience and are often doing more innovative research in the field, they are often not psychologically easy to navigate. Many individuals are often amazed as to how many things would have been forgotten if patients had not been on top of their care. That said, it is a reality whether a program cycles 2,000 patients a year or 200. It is important that patients be able to access organizations like the AFA to find the most accurate, current and unbiased information on fertility treatments and family building options. With education and the right support system from a trained mental health professional patients can feel confident in tackling the numerous treatment choices the uncertainties of pregnancy and finally the joys and surprises of parenthood.