We received the following comment on one of my blogs where I referred to infertility as a disease: “I have an issue with infertility described as a ‘disease.’ I honestly do not consider myself diseased. It also seems to imply one root cause, and the causes of infertility are so varied that it seems almost misleading. What am I missing?” The commenter is not alone in questioning if infertility really is a disease, and the answer involves medicine, ethics, politics, and of course, money.
Do you remember back in middle school when you started every paper with a quote from the dictionary? Well, forgive me for my regression, but let’s begin with a medical definition.
Disease /dis·ease: Any deviation from or interruption of the normal structure or function of any body part, organ, or system that is manifested by a characteristic set of symptoms and signs and whose etiology, pathology, and prognosis may be known or unknown.
By this definition, it would seem no question that infertility is an interruption of the normal functioning of the reproduction system, and thus a disease. But for some, the issue is not so simple.
How Can Infertility Be a Disease When We Have Control over the Causes?
Infertility can be caused by many factors, including some within our control, such as delayed child bearing, smoking, weight (over and under), and sexually transmitted diseases. Also, some consider that the main symptom of infertility—the inability to have a biological child—is a desire, not a health condition.
The exact percentage of infertility caused exclusively by these “self-imposed factors” is hard to tease out. We know beyond a shadow of a doubt that infertility increases with a woman’s age. Even women with other abnormalities in their reproductive system are more likely to get pregnant if they try in their early 20s. The symptoms of many diseases, however, increase with age, so this factor alone should not preclude infertility from being considered a disease. Also, many diseases are caused or exacerbated by things we do. The vast majority of lung cancer is caused by smoking, but no one argues that lung cancer is not a disease.
Is Infertility a Social Issue or Medical Issue?
Whether not being able to reproduce is a medical or social condition is a more complex question, and certainly a more emotional one. Opponents to classifying infertility as a disease argue that wanting a child is not a medical issue. Since when, however, is someone else’s perception of the severity of the symptom a determinate in whether we classify something as a disease? By this reasoning, we could debate whether blindness is a “big enough issue” to warrant being a disease, since it is possible to live without sight, just as it is possible to live without a child.
How Money Factors Into Calling Infertility a Disease
As with so many things in life, money is at the unspoken heart of this debate. Insurance companies are more likely to cover treatment of infertility if it is classified as a disease.
“The debate comes down to this,” said Uwe E. Reinhardt, a health-care economist at Princeton University, “Is having your own offspring with your own genes a matter of human right? And if you can’t accomplish that on your own, do you have the right to have your efforts to achieve it financed?”
Coverage for infertility makes sense on so many levels, not the least of which is medical. For example, couples that are not able to afford the $13,000- 15,000 for in vitro fertilization might opt for the less expensive medicated intrauterine insemination (artificial insemination) procedure, which increases their odds of a multiple birth, especially the odds of higher order multiples such as triplets or quadruplets. Ironically, their health insurance will almost always cover the huge expenses for care of these preemies and their potential lifelong complications, and these cost dwarf the cost of IVF.
One of the most unusual arguments against classifying infertility as a disease and having insurance coverage for the treatment was made in a Newsweek magazine article. David Fleming, director of the Center for Health Ethics at the University of Missouri, said the main concern with making fertilization affordable for more people is the risk of “commoditization” of babies.
“The more you have access, the more people will do it,” says Fleming, arguing that the unfortunate part of making IVF more widespread is its increased ethical stakes, such as those surrounding more premature births, which ultimately increase the cost of health-care coverage for everyone, and more babies with congenital malformations, which are twice as common in babies conceived through IVF than naturally. “The concern is that we are placing these little humans in danger,” he says. “IVF, with all due respect—is it a question of need or a question of want?”
Humm, if I follow him correctly, he is saying that we shouldn’t pay for treatment of a disease because more people might seek treatment. Hello?!?
If the treatment is imperfect, how about spending more research dollars improving the treatment rather than looking for ways to keep more people from getting help. This brings me to one of my main arguments for classifying infertility as a disease. Government and private funding for basic research into the causes and treatment of infertility is far more likely if infertility is a disease.
Even though I count myself among those that argue for infertility being considered a disease deserving insurance and research dollars, I think we have to acknowledge the slippery slope we are on. Yes, we need insurance coverage, but we also need for IVF to be less expensive. Also, we need to freely admit that not all people who can’t conceive are suffering from a disease. The inability to reproduce is a natural part of the aging process, and in truth is not a disease. It seems to me that a 43 year old woman having trouble conceiving is suffering from aging, not infertility.[sws_blue_box box_size=”515″]
Other Creating a Family Resources You Will Enjoy
- The Loneliness of Infertility
- Fear of Getting Your Hopes Up with Infertility Treatment
- Surviving Infertility: Don’t See Life As One Big Karmic Scorecard[/sws_blue_box]
Originally published in 2011; Updated in 2018. Image Credit: jobietan
Thanks for the shout out. We have a huge number of resources to help folks wade through the issues of infertility and we hope folks would check them out at our A-Z Resources guide: http://ow.ly/z0LQ30fAk9T
Karla, no doubt infertility is the major symptom of many diseases, but it’s harder to find funds for research into a symptom.
Oh, my, I have so very many things to say! And now I have to sort through what’s the most useful thing to add to the conversation…I could note that there seems to be some discussion on the interwebs about the semantic difference between “disease” and “disorder” (one example, , but that probably won’t help the conversation too much… 😉
Or, I could go back to your point that “Since when, however, is someone else’s perception of the severity of the symptom a determinate in whether we classify something as a disease? By this reasoning, we could debate whether blindness is a “big enough issue” to warrant being a disease, since it is possible to live without sight, just as it is possible to live without a child.” and note that this is exactly what we do with vision problems. I have terrible vision but am not blind. I am vulnerable without my glasses outside because I can’t see who or what is coming my way or the terrain beneath my feet. My insurance does not pay for my glasses because they are considered “cosmetic”. If I lose my vision due to retinal detachment or glaucoma, then my insurance will cover treatment, but myopia is not considered a disease eligible for covered treatment unless it is severe enough (blindness). My insurance would, however, cover a large portion of IVF treatments.
But, I think my greatest concern with the way that infertility treatment/management is handled in the US is that it increases the role that income levels play in reproductive and family planning choice. Today we see that role in the the cost of adoption, which Adam Pertman describes in his newest book and that you can see on web forums where people discuss, for example, the costs of the graphic designers they hired to create their profile books. You can see some recent statistics from the Guttmacher Institute about unplanned pregnancy rates and income disparity in the US here: http://www.guttmacher.org/media/nr/2011/08/24/index.html. We see it in the swank decor of the fertility clinics in contrast to the general drabness and worn magazines in women’s health clinics, and I think we see it when Planned Parenthood clinics are subject to dedicated protesters when fertility clinics in nearby zipcodes have clear parking lots. It seems to me that coverage of IVF and other ART is only one small piece of the broader discussion we should be having about options for building families of all types and varieties. Do we choose to have structures in place (education, insurance, availability of quality care, etc.) that allow for the full range of family building and planning options available for all segments of society, or do we pick and choose who gets to benefit from all the amazing options we have available today? Personally, the freedom that we have had as a family to find the best path for us, even when faced with infertility, has been so valuable for our emotional, mental, and financial health that I find it truly wretched that these options are not available to everyone.
Anon WP, you have certainly “added to the discussion” and I thank you. You raise some great points. I especially agree with “It seems to me that coverage of IVF and other ART is only one small piece of the broader discussion we should be having about options for building families of all types and varieties. ” Yep, stay tuned to this blog, since that’s what we’re trying to do. Of course, interspersed with less heavy topics. I feel like I’ve kind of been a bit on the heavy side lately.
Regarding AnonWP’s comments about calling infertility a disease – and seeing it as an outcome of disease rather than a disease itself. I understand your thinking, but at the end of the day, I truly do believe it is a disease itself and should be classified as such (as it now is by many health organizations including the world health organization). I believe that it should be considered a disease for many reasons, but just one of them is that while having endo, pcos, or other health issues that can contribute to or cause infertility problems, many people that have endo, pcos, etc… do not experience infertility challenges at all, and thus infertility is unto itself a problem aside from those or other issues. I think there is a distinction between infertility during typical fertile years due to physical dysfunction and simple aging resulting in infertility by design of nature, which isn’t to me a disease in and of itself. Many medical treatments don’t make the underlying disease or problem disappear, they simply work around the problem to alleviate pain, or restore some function. I don’t see why it would make any sense to suggest treating the emotional pain of infertility over the physical issue since IVF wouldn’t remove the emotional issue of not being able to have children without assistance/how one might view themselves. In my experience, for most people the emotional pain isn’t around what they need ‘to do’ to have the children (ie. Medical assistance needed), but the actual inability to conceive and have children (and to some degree to conceive at a time that is suitable for their family). Finally being able to have the desired child/ren makes enormous strides in healing the emotional pain and struggles those dealing with infertility face. Trying to band-aid emotions without addressing the root problem (inability to conceive) with funding for counseling instead of medical treatment would actually be cruel to me. Quite frankly, we should be funding both, like we do for most serious physical disease or injuries.
Susan, nicely said.
AnonWP,
I am not sure what you mean by people can choose to have a baby another way? Are you meaning people can chose to parent a child through adoption? If so, adoption is an entirely different issue than having a disease and medical treatment to address that disease, even if they both involve children and parenting. Adoption isn’t right for every family (but can be a wonderful choice for many families, not just those dealing with infertility). Having difficult physically conceiving a child doesn’t mean adoption is right for you.
Generally when talking about infertility, it means medically diagnosed infertility for those in their typical child-bearing years-which is usually due to involuntary causes where there is a physical problem with some part of the reproductive system. While age-related infertility is becoming a greater issue as people are waiting longer to start having children, infertility affects people of all ages within the reproductive years and very often has nothing to do with age. But, it is important to note that in health care we treat age-related health issues all the time-we don’t say, well that is a natural consequence of aging, so suffer. Many health related issues are not a “medical necessity” in the strict sense that they are needed for life-sustaining measures, but are considered necessary in order to treat the medical problem at hand affecting the person’s normal functioning. Infertility is the only example I can think of where people suggest the worthiness of funding treatment is based on what you will use the working body part/function for as the criteria for coverage or denial of coverage. For example, I have never heard anyone suggest that being able to have sex isn’t a medical necessity so insurance shouldn’t cover an injury of a man’s sexual organ. The point is that the body part is injured/diseased/non-functioning and it is reasonable to expect it to be treated by health care.
I know this is an older post, but I really wanted to comment. For starters, I believe infertility is a disease AND a disability.
Robyn said you can’t make an analogy between infertility and blindness-I disagree. Robyn suggests you NEED sight to be able to do almost anything “normally”…and “not being able to procreate is very different”. I don’t think they are very different, they are both a case of a particular body function not working normally (for whatever reason) causing significant challenges in some part of life. We could make up a huge chart of which disease/disorder/disability is better or worse than another, but I bet we would all disagree at least some of the ranking, and at the end of the day…it wouldn’t diminish the fact that they are all real issues for those dealing with them. The problem is people tend to dismiss infertility with this type of reasoning, well, it isn’t a “real” disease, or it isn’t as bad as “this” disease, or “my” disease, or you can still do “this” so quit complaining you have it better than “this”. Infertility can be a huge impairment to living a “normal” life, of course not in the same physical sense that visual impairment is, but without question infertility can be a significant life crisis with very real impairments to everyday life and things most people do “normally”. Infertility affects social relationships, marital and familial relationships, it can affect emotional health and well being, in can affect productivity and career opportunities and then the fallout from all those things can have significant physical health effects too.
I take issue with the analogy between blindness and infertility. Blindness isn’t a disease, but a disability. One needs sight to be able to do almost anything “normally.” I worked on accessibility issues for the blind in the computer industry. It’s amazing how much sighted people take for granted. Not being able to procreate is very different. You don’t need a child to drive a car, navigate a web site, watch a movie, and so on. Yes, being blind can be accommodated, but only after decades of legislation and some medical breakthroughs have occurred.
It would be more apt to compare infertility with cancer, fibromyalgia, or other actual diseases or disorders. I think if you want to make your point, you need a more direct comparison.
Robyn, point well taken.
Dawn,
I understand the funding issues in research but just a question you may want to ask because funding is only part of any study. How many have volunteered to be studied for medical studies on infertility. The willingness to allow yourself to be studied, poked, prodded and tested…not to try to new treatments or drugs but to be studied.
I sought out a longitudinal study at the NIH on my disease, signed up, did the paperwork and became part of the study to find out the cause i.e. genes, QOL, overlap symptoms, etc. I am also in another study for my disease that is looking to determine prognosis and what works best in our care. Neither study will benefit me but it will benefit others in the future.
TheAdoptedOnes, I hope many will agree to be studied because you are exactly right–all research needs subjects and often the motivation has to be altruistic.
Infertility affects a person not just physically, but emotionally and often financially. Yes, I think it IS a disease. That said, not everyone who is infertile “suffers” because of it. Some people do not want children, or like myself had always planned to adopt, so they do not suffer the way others do who long for a biological child.
Personally, I think saying it is not a disease is minimizing the pain someone who has this condition is in. Saying infertility is a disease is not an insult, for heaven’s sake, anymore than saying diabetes or cancer are diseases. No one is blaming (or should be blaming) the sufferers, but is still a disease.
Dawn, I do indeed stay tuned to this blog. It’s great! I came across it after listening to one of your podcasts when I was trying to learn more about the effects of prenatal drug and alcohol exposure. The ‘cast was excellent and when I tracked down the site, I was sold. Nowadays I mine your show’s archives for background on topics and regularly check in on the blog. I didn’t have anything particular to add to the most recent few entries, but I found them absolutely fascinating, and I’m sure I’ll read through them again in the future. Thanks for creating and maintaining such a rich, multi-layered space for discussion and learning.
People can choose another way to have a baby, so why should you expect insurance to cover the cost of IVF or some other very expensive procedure. You have other choices and having a bio kid is not a medical necessity. Seeing is, but a child is not. So insurance should cover blindness, but not IVF. I don’t care whether you call it a disease or not but a lot of woman wait until they are older and then expect a miracle.
Kimberley, I don’t consider calling infertility a disease insulting, but I do find it somewhat misleading. I freely admit, however, that I’m probably getting caught on my own colloquial definition vs. the formal, medical definition. I’ll try to explain why I take issue with it and look forward to the responses.
I think of infertility as an outcome rather than a disease in and of itself. For example, its my understanding that age-related infertility is mostly a result of a thing healthy women’s bodies do. Endometriosis is a disease, but if that leads to infertility, then to my mind the infertility is a result of the endo rather than a disease itself. Even in cases of infertility of unspecified or unknown causes, my assumption is that there is something triggering it that we can’t identify yet. It’s an indicator of some sort of biological hiccup. It is also important to realize that using IVF to become pregnant generally does not make the infertility disappear, nor does it remove the emotional, reevaluation-of-how-I-view-myself-and-thought-my-life-would-go pain of not being able to have kids without medical assistance, though it may mitigate it. So, to treat the emotional pain of infertility, it may be more appropriate to pay for counseling and mental health treatment than for ART. The financial impact is largely one born of trying to manage the infertility, not from the infertility itself. One need not incur any additional costs from living with infertility, and it could be a pretty quiet condition overall with only one rather large effect – the inability to have children without help.
If we’re talking about treating the underlying things that causes infertility, then in most cases, the root cause cannot be cured (or even identified in some cases), though it can be worked around (scarred fallopian tubes, for example, are bypassed by implantation; low egg reserve by stimulating the ovaries; etc.). IVF doesn’t really treat the cause of the infertility – it helps you skip some of the most tricky early steps of the reproductive process. Dawn’s argument above that classifying it as a disease may lead to more dollars for research is intriguing, and I need to think on that a bit more.
I worry that if we choose to call infertility a disease, we may actually be undercutting a case for why reproductive medicine, including IVF, should be covered because it may end up with you answering points like the one above instead of a broader question: should a society do what it can to put reproduction, a basic function of living human beings, within the reach of all its people? I think the quote from Reinhardt nailed it. (Of course, if so, then we’re asking society as a whole to take that on, not just insurance companies, and that has implications as well in terms of regulation, support for families created through IVF and other forms of ART, etc. Good gracious this stuff is complex!)