All In This Together: 4 Ways Practices and Patients Are Uniting Around Infertility Awareness Week

By Griffin Jones

If I asked you to name what comes between September and November, you might answer Breast Cancer Awareness Month (BCAM) before you say October. Is there any oncology center in America that doesn't participate in breast cancer awareness month? Is there anyone who doesn't recognize those pink ribbons? Over 1.5 million people participate in the Susan G. Komen races alone. With major partners like the NFL and Proctor and Gamble, the month is almost too popular; to the point where criticism is made that brands exploit the cause for their own profitability. Meanwhile, all the infertility community wants is recognition of their disease and the resources to treat it.  Yet of course BCAM is so much more widely known than National Infertility Awareness Week (NIAW). After all, statistics show that 12% of all U.S. women will develop breast cancer in their lifetime. That's dramatically higher than the 11.9% of women who receive infertility services within their lifetime. 

Oh.

Infertility lacks a giant brand champion, like the National Football League

Infertility lacks a giant brand champion, like the National Football League

Breast cancer is a serious disease that causes horrible hardship on millions of families. It deserves every bit of attention that it receives. I hope 2016 is the year when the infertility community acts in solidarity for the same.

NIAW 2016 is quickly approaching, April 24-30 (May 12-20 in Canada), and clinics and patients have a vested interest in spreading awareness about infertility. The lack of infertility awareness is one big problem that compounds many others. Practices have time and priority constraints that sometimes keep them from being fully active in their promotion of the cause. Those struggling with infertility have priorities of their own, and for some, infertility may be too personal of an issue to discuss with others. I understand; no one can tell you that you should talk about infertility in an open setting. It's a personal decision and one only you can make. It's worth examining, however, how obscuring infertility from the public eye compounds the other issues that come with it.

1). Social PRESSURE

"When are you going to have a baby?"
"Don't you want kids?"
"You can have my kids."
"You can always adopt."
"Just relax and it will happen."

People ask these questions because they know very little about the infertility journey. Comments like these are what spurred Tyra Banks and Chrissy Teigen to inspire the #stopasking hashtag in the fall of 2015. I know how much this bothers you because I see the companionship that forms around the #ttc (trying to conceive) community every time this pain point comes up. Some of the most popular themes that I post to social media are the articles that talk about what not to say to someone with infertility.

One of the most popular infertility e-cards on Pinterest

One of the most popular infertility e-cards on Pinterest

Discussing your plans for children makes for easy conversation...for someone else. Most of your friends and acquaintances have no idea how common infertility is or how painful such otherwise ordinary questions can be. I would have had no idea if I didn't work in the infertility space. I'm sure I would have made many of the same stupid comments, all with the best of intentions. If these conversations bring you great pain, it may be less painful to participate in the conversations that help educate people.

Social pressure may also be projected onto fertility clinics and their staff. When someone spends thousands of dollars on IVF, they are essentially paying you to solve their problem of infertility...problem...singular. Of course infertility actually becomes an amalgam of many problems. Because you are the one being paid to "solve the problem", by default, you can be assigned responsibility for all of them. By participating in the greater cause to address the social pressure that your patients face, you may be able to allay some of the pressure that you feel as well.

2). Financial BURDEN

At issue: far too many people think of infertility treatment as elective. Only 15 states mandate that insurances cover any kind of infertility treatment and of those, RESOLVE grades only five with an A.  Legislators and employers don't feel hurried to extend coverage because they don't perceive it as a great enough priority to their constituents or employees. If infertility was more widely talked about, and greater societal emphasis was given to its treatment, less cost would fall on you as a patient. It's a big deal when an insurance company tries to avoid paying for treatment of other diseases. If everyone you knew understood the severity of infertility, far more companies and states would mandate coverage for IVF and other services. Having to pay for IVF out of pocket is owed in no small part to a lack of knowledge about the disease.

States ranked by RESOLVE

States ranked by RESOLVE

Clinics, too, face financial limits when public understanding of infertility is poor. There are three reasons.

  1. Your "word-of-mouth" referral network is dramatically smaller than its full potential if your patients don't feel comfortable speaking about infertility. A patient cannot recommend you to someone who would really benefit from hearing about her experience if the conversation isn't welcome to take place. 
  2. People are sometimes terrified to see an infertility specialist, because they have insufficient information and a lack of assurance from confidants. Fear reduces the total number of people who should be coming to your office.
  3. Cost is the single greatest factor that prevents patients from proceeding with treatment for infertility. Dr. Tarun Jain of Chicago IVF finds that "in states where IVF coverage is mandated, about thee times as many people use IVF than in non-mandated states. It's about the same multiple seen in European countries which cover IVF." If infertility was enough of a public concern, your center could be doing three times the number of cycles that you  do now, and many of your patients wouldn't be overwhelmed with the stress of the cost.

3). Emotional STRESS

Many people going through infertility say they feel much better when they are able talk to others who can validate their feelings and experiences. "I am so happy to have found all of you" is a very common sentiment among the #ttccommunity on Instagram. Many more would love to connect with people who share their experience: they just don't know they exist. Not all support groups are equal and some types of support may be better fit for you than others. You may feel more comfortable face to face, or you might like an online setting with anonymity. Some may prefer not to connect with anyone at all, and that's perfectly fine, but everyone should be informed of their options. Most people struggling with infertility say that they found their support resources on their own. Neither peer support nor mental health professionals (MHP) can eliminate the burden of stress that accompanies infertility, but a lack of general attention to infertility lays an unnecessary barrier to emotional relief.

Photo from Good Housekeeping

Photo from Good Housekeeping

Emotional stress has even broader implications for practitioners than only their patients' mental health . According to a study by Courtney Lynch, PhD, MHP, of The Ohio State University School of Medicine, women with high stress levels had decreased odds of pregnancy of 29% compared to women with low levels. While there's no data to prove that greater emotional support will increase the likelihood of pregnancy, research from the University of Michigan Health System concludes that peer support helps reduce stress, isolation, and depression.

Equally, my research shows that only 2% of negative fertility center reviews mention a successful pregnancy or the birth of a baby. The contrapositive is true for positive fertility center reviews. What's interesting is that several dozen fertility doctors in the United States and Canada have very few negative reviews. We know that their success rates are not above 80%. For reasons not yet defined, patients feel they have other venues for venting their stress. Neither the clinic, nor the doctor, nor the nursing staff should be the focus of an individual's emotional stress, so it is in the practice's interest to empower patients to access other avenues of support if they so choose.

4). Medical Impact

A very common concern shared by reproductive endocrinology and infertility (REI) specialists is when a woman waits too long to be seen by a fertility doctor. Time can be a crucial factor in the process of fertility treatment and if a woman is reluctant to schedule an initial consultation, she may be equipped with less options later on. Melissa Campbell of the infertility awareness blog, Triumphs and Trials, shares that women dealing with infertility are often hesitant to see an REI because they are nervous that the doctor will pressure them into IVF.

"To me, it felt like a death wish," Campbell says. "I'm going to go [to a fertility clinic] and they're going to push me into IVF. I feel like I have to do everything possible before I even go see an RE"  

"We need to remove the perception that REI equals IVF," says Dr. Matt Retzloff of Fertility Center of San Antonio. "One of the trade-offs is, the longer we wait, the less tools we have in the tool chest to help out. We want to see you sooner. It gives us more options."

Is it a reach to say that clinics' success rates would improve if couples and individuals coping with infertility scheduled their first appointments earlier in life? Very generally, patients would have increased probabilities of having a baby if they were able to take advantage of more options and benefit from earlier detection. As a society, we can both receive and deliver better medical services if the public is more alert to the challenges of infertility.

Take action: #Startasking

It's time to team up. Practices, advocates, couples and individuals dealing with infertility, and their collective communities can act together to turn the tide to bolster understanding of infertility. This year, RESOLVE has laid the groundwork for a very powerful social media campaign. Instead of a theme that demands that people stop asking, the #startasking initiative addresses social stigma head-on, by encouraging people to learn more about infertility, its implications, and options for treatment. Working together, and taking advantage of the tremendous power of digital media, here are four ways to make National Infertility Awareness Week 2016 the most successful yet.

1). Snap those selfies
 People love to see their fertility doctors and nurses through social media. People love seeing IVF babies. People still struggling with infertility love to see their supporters from the #ttccommunity. Download the official NIAW selfie sign which includes a #startasking bubble to write in your #startasking topic. Here's the easiest way to approach the topics you'll pick for your #startasking questions. 

  • For clinics: What are the five most common misconceptions that your new patients have about infertility and treatment? These usually tie into patients' greatest fears. For example, if you find that your patients are reluctant to schedule an initial consultation because they are afraid that they will be pressured into using IVF, your post might be, "#startasking us about options other than IVF".
  • For people with infertility: This is your chance. You get to control the conversation for once. Instead of holding back tears because someone else took your conversation in the direction of when you will have kids, this is your opportunity to decide what you want people to know about your journey. 

2). Ask with video
Instagram video allows for fifteen seconds and there's no such limit on Facebook. For no cost, use your smartphone to record your video questions and post them on your own channels and those of others. Practices can both pose and answer general questions to and from their communities. People dealing with infertility can record their questions and answers and share them with both the #infertilitycommunity and their clinics.

3). Share each other's content
I normally don't recommend that clinics spend too much time on Twitter, but if you have a Twitter account, this is the time when it makes sense to post and share other groups' content using the #startasking and #niaw hasthtags. Share RESOLVE's posts on Facebook and Twitter. The #ttccommunity is very good at sharing content, even on Instagram where there is no native reposting function. Sharing one another's posts about #NIAW is a tremendous way to increase the visibility of the community.

4). Tag each other
I know I needn't say more, #ttccommunity. You are the best at tagging one another and bringing each other into the conversation. I hope that #startasking and #niaw make for a very meaningful dialogue for all of you. While fertility centers can't tag patients without the proper authorization, we can tag @resolveorg and other support resources, and even tag other clinics. Yes, competing fertility centers can collaborate on content distribution. Competitors joining forces for a specific cause is often very well-received, like when the three major news networks came together for the fight against cancer.  Patients find it reassuring and media outlets pay greater attention.

Push for The Turning Point

Nearly every problem we face in the infertility space is compounded when awareness about infertility is low. You face unfair social pressure and financial stress because not enough people are conscious about the devastation caused by infertility. Medical treatment is denied to hundreds of thousands of people every year. Other medical conditions have found tremendous recognition through their awareness efforts and the infertility world has an opportunity to unite in a way that benefits everyone and gains the acknowledgment it deserves. RESOLVE President and CEO, Barbara Collura, encourages "the entire infertility community to call attention to this disease. By asking the tough questions about infertility, we not only have an opportunity to raise awareness about this disease, but also to motivate all who are touched by infertility to commit to the cause.”

At the very least, National Infertility Awareness Week 2016 is an opportunity to gain more exposure for your practice and more understanding for your fight as a patient. As a specific time-frame with a specific goal, it is easy for the media and public to understand and support. More ambitiously, it could be a turning point in this long, exhausting struggle of an issue that people know so little about, or worse, doubt its seriousness. You don't have to hope that a major network reporter will pick up your press release and decide to cover infertility awareness week. We have the power to call attention to the cause with the content that we create. Our own social media efforts give us the distribution to reach beyond our immediate communities. Our creativity will determine how far it will go. Patients, practices, and advocates are coming together to benefit the entire field.