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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. 

 

10 Infertility Support Ideas from a Conversation That Never Would Have Happened 10 Years Ago

By Griffin Jones

"We're all working together. That's the secret." --Sam Walton

On one hand, I absolutely hate millennial business buzzwords, and on the other, I deliberately use them often. I choose to say "silo busting" because of how important it is for different "departments" to be familiar with each other's goals and challenges. "Silos" aren't just separate departments within companies, they can be any sub-category of any group.  According to social scientist, Tom Wolff, PhD, of the University of Kansas, all community stakeholders have to be engaged in order to solve common problems facing the community. In the infertility community, our many roles account for many different stakeholders.  We have embryologists (scientists), reproductive endocrinologists (doctors), nurses, business managers, patients, support groups, mental health professionals, and advocates (among others). 

Bringing ideas together

Bringing ideas together

Physicians need to focus on the clinical treatment of hundreds of patients. Embryologists have to worry about the conditions of the lab and of the gametes. Patients are managing their personal aspirations, medical concerns, relationships, and financial status at once.  Business managers have goals for new patient consults and IVF cycles. With such demanding tasks, it's easy for all members of the team to lose sight of the complete patient experience, and it's easy for patients not to understand why. 

According to the Harvard Business Review, "customer-centric companies live by a set of values that put the customer front and center, and they reinforce those values through cultural elements, power structures, metrics, and incentives that reward customer-focused, solutions-oriented behavior".  In other words, we need feedback from every stakeholder in the community to collectively agree upon mutual goals. How the heck do we that? We can start by talking to one another...at the same time.

New technology=new opportunities

Just two decades ago, we  had very few opportunities to bring together people from different ends of the fertility space for public conversation. Today, new media allows us to bring together experts and advocates from nearly every part of the world.  Blab is a relatively new social media platform that is still in Beta (product and market testing). Who knows if it will skyrocket in growth like Snapchat or fizzle away like Foursquare, but the forum gives us something we are all hungry for: the ability to openly meet around a topic with public dialogue. Think Twitter meets Google Hangouts. Blab is a way, for up to four people with webcams, to have a conversation that is open to the public to comment on and ask questions in real time. Last year, when I first learned about Blab, I immediately thought about its potential benefit the infertility space. We don't have too many opportunities to bring together doctors, patients, and support advocates in a public setting. I wanted to do exactly that.

WHERE DO WE START?

We know from psychological research that infertility causes as much stress and anxiety as a cancer diagnosis. Yet we frequently hear from patients that they found out above their infertility support group on their own.  We  also observe from fertility clinic reviews, that patients are three times more likely to leave a negative review if their fertility treatment did not result in a pregnancy. So if the practice is only concerned with the clinical outcome of treatment, the public reputation of the clinic will suffer accordingly. Informing patients of support resources has an emotional benefit to the patient, a professional benefit to the physician, and a business benefit to the practice. According to a 2013 survey by Dimensional Research, 90% of customers report that their buying decisions are influenced by online reviews. If we want patients to be as satisfied with their experience as possible, we need to know what support resources exist, and how to direct the patient to them, if they so choose. In order to do that, we need representation from everyone involved.

Who's responsible for what?

In January 2016, I hosted a Blab with

  • Dr. Matt Retzloff, Reproductive Endocrinology and Infertility (REI) physician at Fertility Center of San Antonio
  • Rebecca Flick, Vice President, Communications, at RESOLVE, the National Infertility Association
  • Melissa Campbell, Infertility blogger and support advocate from the website, Triumphs and Trials

From four different perspectives and one half-hour conversation, we were able to extract at least ten different observations that are important for practices, patients, and support groups to know:

  1. People are often reluctant to see an REI because they are afraid that IVF will be pushed on them. REI practices may want to inform local OBGYN offices of infertility support groups in their area, because some patients seek peer opinion before they seek professional opinion. Equipping OBGYN practices with support contact deepens the relationship with the referring office and provides another step in which patients may become comfortable to seeing an REI. 
  2. "Writing a prescription for RESOLVE" is one way for patients to leave their first consult with information on support. It also ensures that talking about support resources becomes part of the standard of care.
  3. RESOLVE flyers on local support group information belong in folders that go home with all new patients. When a new support group forms in your area, RESOLVE will e-mail you a flyer with the group meeting details and contact information. This info may also be found through RESOLVE's zip code search
  4. Go through RESOLVE training: For areas where support groups don't exist, interested patients can go through RESOLVE training online.
  5. Instagram is home to one of the most vibrant online infertility support communities. People dealing with infertility sometimes send each other care packages and cards to the communities they form online. This free resource, for you to give to patients about infertility blogs and podcasts, came largely from suggestions on Instagram. 
  6. Social media can be great for peer support, but professional input is limited because of HIPAA regulations. For medical advice, patients should always contact a physician.
  7. Staff may need training on responding to and distributing information on requests for support. Unfortunately this is not the first time I've heard of someone wanting to leave support information with their doctor's office and not receive a response.
  8. Remove the perception that REI=IVF. All options are only available when the patient comes to see the REI. More content on when IVF may not be necessary, could help patients make their decision to schedule an initial consultation sooner than later.
  9. Patients should do additional research on support resources: The practice can give the patient an excellent start on infertility support information, and they will be able to find out what is best for their individual needs with some investigation.
  10. Training/education on support may be beneficial for REI fellows. At issue, too many people are not receiving emotional and social support for their infertility despite receiving clinical treatment for their condition. By setting a training standard for REI fellows, we could incorporate support into the standard of care. 

we're just getting started

One conversation won't cover all of the issues we have in the infertility space. Still, twenty years ago, we didn't have the opportunity to bring people together to consider various perspectives on a common issue. With emerging digital media, we have the opportunity to remove barriers that don't need to exist anymore. We have a chance to learn from each other so that we can all benefit from the improved patient-practice relationship. Using new media like Blab can be the first step in building more and stronger relationships across different disciplines within the field of infertility.

 

10 Highlights From What You Missed at RESOLVE's 2015 Night of Hope

By Griffin Jones

November 17, 2015 marked RESOLVE's 18th annual, Night of Hope, in Manhattan. As the cardinal event of the national infertility association, the gala promotes RESOLVE's mission to support men and women experiencing infertility.

Happy I got a photo opp with the Resolve dream team.

Happy I got a photo opp with the Resolve dream team.

It was a fun and thoughtful affair, with about 375 people from all over the country in attendance. Here are some of the highlights:

  1. Dr. Jason Griffith of Houston Fertility Institute won the Hope Award for Advocacy for his work to raise public awareness on infertility. 
  2. Julie Berman won the Hope Award for Service for her work to advance the mission of RESOLVE.
  3. Bobbie Thomas, style editor of NBC's The Today Show, hosted the evening. Thomas mentioned that she began her advocacy on social media and received support from hundreds of thousands of women, prompting her to take on a greater role in promoting awareness of infertility as a medical condition.
  4. The party favor for the evening was a magic eight-ball, with only a positive outlook for the future.
  5. Karen Grote won the Hope Award for best blog. Grote said in her acceptance speech that she originally wanted to keep her identity as an infertility blogger anonymous but that her role in the community quickly changed that.
  6. BASF Corporation now offers IVF coverage to their employees as an employment benefit because of a letter from one of their teammembers who needed treatment.
  7. Alisyn Camerota, who won the Hope Award for achievement, was unable to be in attendance because her duties as a  CNN anchor brought her to Paris to cover the events there.
  8. Dr. G. David Adamson of Palo Alto Medical Foundation (PAMF) won the Barbara Eck Founder's Award for his leadership in the field of infertility. 
  9. The evening pledge goal of $50,000 was met with an influx of supportive text messages displayed on the big screen.
  10. Not a single soul wanted to see Dr. Alan DeCherney have ice water poured over his head--the false prize for the pledge being met. We were all relieived to watch Bobbie Thomas sprinkle him with confetti instead.