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Fertility Patient Relations

5 Lessons from Advocacy Day That Will Teach You to Never Mess with The Infertility Community

What a day. Legislation hasn't been this much fun since School House Rock. RESOLVE, The National Infertility Association, held their 2016 annual Infertility Advocacy Day at the Capitol on May 11. Over 200 advocates came to Washington, DC to meet with their legislators regarding a few key issues that deeply affect both the infertility and military veteran communities. This was the largest advocacy day that RESOLVE has hosted to date and we hope it's only a glimpse of the momentum that is building for the future. If the relationships made between advocates are any indication, this is a movement set for growth. If you've ever wanted to connect with the infertility community, you need to come out for Advocacy Day; plain and simple. Read on to determine if it's the right fit for you. Let's start with some background on the issues for which we went to advocate:

24 Things You Would Never Know About Infertility Until You #StartAsking

Last night I had one of the coolest conversations that I've had in a little while. The best part, is, we recorded the whole thing. This week is National Infertility Awareness Week and I wanted to participate in the #startasking dialogue, not just with sound bytes or with a scripted narrative, but a candid, meaningful conversation between people who really want to see the infertility community receive the recognition they deserve. So I invited a few cool people to chat on Blab.

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

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.

How Much Does IVF Really Cost? Why No One Will Tell You The Plain, Ugly Truth

By Griffin Jones

How do people feel about the financial charges associated with IVF? I don't know, you tell me.

  • "Incompetent or possibly fraudulent insurance practices"

  • "Almost a year later I am still unable to officially take care of my billing issues"

  • "They have no problem with asking me for money but pointing out there was a descrepancy [sic] in billing no one would answer"

All of these comments come from real fertility clinic reviews. Is this frustration familiar to you? Financial stress is one of the biggest pain points in dealing with infertility and it sometimes negatively influences your relationship with your fertility clinic. As if infertility didn't already give you enough to deal with, its best medical solution is one of the most expensive endeavors you'll ever face. Some people talk about the cost of IVF in terms of financial infertility, because it is the most common obstacle that prevents couples and individuals from seeking treatment. We frequently see GoFundMe and other crowdfunding campaigns to raise money for IVF. In most U.S. states and Canadian provinces, the expense of IVF is paid out of pocket. Even in the United Kingdom, where the National Health System (NHS) covers most health expenses, there are still many people in the U.K. who don't qualify for the terms of coverage and they too have to pay from their own accounts.

Organizations like RESOLVE advocate for broader and deeper coverage of fertility treatment and you can join them for their 2016 infertility advocacy day on May 11.  Still, even in states like Massachusetts where insurance companies are mandated to offer IVF coverage, you find plenty of complaints about billing and unexpected charges.  At issue, there are many items you can be charged for because needs vary from patient to patient. It's not uncommon to see posts from people who say they've spent over $50,000 on costs associated with IVF. That's a wide leap from the IVF packages listed at $7,500. 

This variance poses a problem to you as you search for information to properly plan your budget. In the spring of 2015, I surveyed a small group of people dealing with infertility who listed cost confusion as one of their three most common pain-points in dealing with their clinics. You want a clear answer.  You want the transparency that you enjoy in almost every sector in which you spend your money. You instantly pay for everything else at fixed prices from Amazon, Priceline, Fandango, and Blue Apron. Why can't you get a straight answer about how much IVF will run you? You need to know what costs you'll incur and how much of it will be covered by insurance in order to budget for your treatment. Why aren't clinics more transparent with you? 

The answer is multi-faceted, so let's dig into it.

Hidden costs in IVF

proven fact: insurance is the devil

Let's start with one of the very few, axiomatic, incontrovertible laws of the universe: insurance is a nightmare. Remember the national debate we had about healthcare coverage just a few years ago? Effectively, the arguments centered around whose solution would make our horrible payer system even more horrible. The problem certainly isn't unique to fertility care; all of healthcare is plagued by the problem of cost uncertainty.  A study conducted by Consumer Reports shows that billing disputes are the third most common complaint Americans have about their doctors. Why can't a provider tell you how much a service will cost before you decide to go through with it? CEO of tech startup, PokitDok, Lisa Maki, says that people "are trapped by a system that requires that they agree to a service with no knowledge of what the outcome or what the consequences might be to them financially". It's a conundrum. Put yourself in the position of the billing manager; they hate it just as much as you do.

does insurance even cover ivf?

Glad you asked. Every U.S. state and Canadian province is different. In the United States, some states have mandated coverage. If you don't know the universal definition of mandated coverage for infertility...it's because there isn't one. It's helpful that RESOLVE grades states based on how much coverage is mandated. Some states like New York and Texas may be considered mandated states, but their coverage varies. In New York, insurance companies are mandated to cover certain treatments like IUI, but not IVF. In Texas, insurance companies are required to offer coverage in plans to employers, but employers do not have to purchase those plans.

IVF cost confusing

Even in states like Massachusetts and Illinois, the law doesn't apply to certain types of employers, such as those who self-insure. What's more, you may live in a mandated state, but if your employer is not based in that state, then your home state's coverage doesn't apply to you. Don't forget about deductibles, either. You may need to spend a certain amount before insurance will pay for anything. Certain tests and medications might be covered and some might not. If you'd like to take a look at your clinic's website to see what insurances they accept, that won't help much. Every person's coverage depends on their individual plan. What might be covered for your co-worker might not be for you.

the ivf package price is not the total cost of treatment

Is your head spinning yet? We'll table the idea of insurance for the moment. Let's approach this as though you're paying entirely out of pocket. What other costs might you incur in addition to the price of the IVF cycle?

  • Tests. Ask your IVF coordinator if your package has a limit on labs or ultrasounds during treatment. If there is a limit, how many labs and ultrasounds are included and how much is each additional?

  • Medications. Which drugs are included in the package and which are not? How much do they cost? Is your doctor able to prescribe generic or other brand labels that might be covered by insurance? Are you allowed to buy them on your own?

  • Labs. Does your clinic have an in-house endocrine lab or are your labs sent out to a third party? Labs will be drawn throughout your treatment that need to be resulted the same day. If your labs are sent to a third party, there may be an additional cost to you.

  • ICSI. Is Introcytoplasmic Sperm Injection included in the package? According to Sher Fertility Institute, ICSI is often required when cases involve the severest degrees of male infertility.

  • Embryo freezing. Some clinics will store your embryos in cryopreservation for six months after your IVF cycle, and some might include it for a year. How many months are included in your IVF package? What is the fee for each additional month of storage?

There are even more potential costs associated with IVF

There are even more potential costs associated with IVF

  • Anesthesia. If the clinic doesn't disclose whether or not anesthesia is included, it is likely that they charge an additional fee.

  • Donor eggs. Donor egg prices are not included in IVF packages unless specifically mentioned in separate pricing. The clinic may have their own donor bank or they may use a third party. If this is a need of yours, it will mean additional costs.

  • Surrogacy. If you have this need, the total cost of surrogacy may be as high as $150,000.

  • PGD. Preimplantation genetic diagnosis can greatly improve pregnancy success rates by carefully selecting embryos. For older women, and women who have suffered early pregnancy loss, PGD may be all but necessary. Rarely do IVF packages include the cost of PGD.

See? Now you understand why it's so hard for clinics to quote one all-encompassing price for IVF, beyond the most basic IVF package. Rachel Gurevich of About Health reports that the total cost of IVF treatment averages around $20,000, as opposed to the $12,000 average cycle price. There are so many moving parts, it's virtually impossible to give you one set price. As far as clinics are concerned, they need to start displaying "sample pricing". As far as you're concerned, it's better to estimate very conservatively.

then why the heck doesn't my clinic just tell me all this?

This is a great question and it's part of the reason I wrote this post. Fertility practices need to get better at educating prospective patients on cost complexity. From my observation as a marketer, some fertility centers aren't good at discussing finances for two main reasons.

  1. Doctors don't like to talk about money. Generally speaking, they find it unbecoming of the conduct of a physician. They hold the patient-physician relationship to be very sacred and they don't want to cause you to think otherwise. They want you to know that they are invested in your care and not the financial arrangement behind it. I see two scenarios play out in online reviews--one that validates physicians'reluctance to talk about money and one that reveals an adverse effect. In the first scenario, the doctor is perceived as "money-grubbing" or trying to "sell" IVF. In the second, people are surprised by a bill and they lash out at their practice for a charge they weren't expecting. Finance isn't an easy subject to bring up, and that's why most physicians leave the discussion to their billing department. The appropriate sales conversation for infertility treatment is content for another post.

  2. Clinics are afraid to be punished for doing the right thing. What happens when a fertility practice tells you to budget $20,000, and you get a quote of $8,000 from one of their competitors? To a degree, this concern is justified. Tests show that, if not supported by the necessary context, pricing can sometimes drive people away. I would know. I am not the cheapest marketer that someone can hire and I never want to be. When I quote someone for a price, I want to include everything they might need. If I tell someone they should budget for a marketing strategy at $6,000/month, I include an advertising budget, graphic design, web development, etc. Someone else might tell them that they charge $600 per month for marketing services. That $600 doesn't do much but it sure sounds better than $6,000. No matter the service, people often ask about price before considering the total value being offered. This creates an undesirable cycle: you won't tell me your pricing until I'm more interested; I'm not interested until I know your pricing. This is very annoying for both parties involved, fertility centers and their patients.

be an educated consumer, and make sure they know it

So why should your  fertility clinic show you detailed sample pricing? Are they trapped in a catch 22? Tests prove that the advantages of publishing prices far outweigh the disadvantages Think of it this way. Do you ever stop shopping before you know what the price is? What is the cost of a ride across town? You won't know until the cab stops and adjusts their meter. So you choose Uber, because you see the price in advance, and peer reviews validate the experience you're looking for. To compete for your selection, fertility clinics need to be more upfront with pricing. Leave that part to me.

For your part, the more educated you are as a patient-consumer, the more information practices will have to provide to you ahead of time. You are now conversational in the basics of infertility financing. You will be fluent by the end of your journey. To start, you have some background knowledge of which costs to investigate. Clinics are reluctant to share more information on pricing, partly because they are concerned that their competitors will get away with cost ambiguity. Don't let competing fertility clinics win by giving you less information. As an educated patient-consumer, you have the power to let transparency rule the day.

 

 

5 Essential Questions Your Fertility Clinic Needs to Answer at Your First Appointment

"They treat this place like a baby factory. Doctors spend so little time with patients."

Factory. This is a word we hear very frequently when people are unhappy with their fertility centers. Do you feel like your fertility clinic is a factory? Do you see your doctor as much as you expected you would? Are your phone calls promptly returned? Do the staff remember your name? Now, some of these issues matter more to certain people than they do to others. Some people are perfectly happy with a "baby factory", provided that the factory produces a healthy baby. Some are really only concerned with the final result and less so with the process that leads to it. From a small group of patients I surveyed, slightly more than half would have preferred a doctor with an atrocious bedside manor but with exceptionally high success rates. The other half preferred a personable, compassionate doctor whose success rates were well within the standard of care. Surveys conducted by Dr. Francisco Arredondo of RMA of Texas conclude the same. There is no right or wrong decision, so long as you are perfectly aware of the decision you're making.

5 Alternatives to Letting Your OB Choose Your Fertility Doctor That You Can't Afford to Ignore

You alone decide, but you are not alone in informing your decision.

I've been writing a lot for clinics recently and I owe a lot more content to you, especially when you have big choices to make about which fertility specialist you're going to see. It's not an easy decision and it's not one a referring doctor or even a close friend can make for you. The choice is yours. This is the value that I've proposed all along; help practices improve so they can attract more patients and help patients be wise and clear with their decisions so that practices have to continually improve. Though I haven't created much content for you in the last several weeks, I have been doing a lot of listening. I really appreciate the feedback you've given me on Instagram about how you found your fertility clinic and what factored in to your decision making process.

We don't "like" it anymore: 7 reactions from the infertility community to Facebook's new options

Now here's a social media update that has already begun to change the way fertility practices and their patients interact with each other. We have been waiting for this new function for some time. On February 24, Facebook introduced a change to how its users can react to content on the platform. In the past, you posted a status update and people either liked it or they commented on it (if they reacted at all). And that was it. So if I posted a picture of my breakfast, an announcement about starting my new job, or the passing of my Grandmother, you as my Facebook "friend" would have to comment on the photo in order to distinguish your reaction from a general like. The like function would feel very inappropriate if the post mentioned bad news, or very underwhelming if it dealt with something outstanding.

6 Ways Savvy Fertility Clinics Are Preparing to Take IVF Cycles From You in the Next Recession

"Then the Grasshopper knew...it is best to prepare for the days of necessity."

Generally speaking,the last few years have been very good for fertility clinics. We seem to be in a time of abundance. So I write this article now, to reference when the time comes. A mediocre patient experience or sub-par marketing presence may suffice for the moment, but now would be the time to begin improvements to avoid increased vulnerability during any potential drop in IVF cycles.

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

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).

5 Rules for Writing a Negative Review That Will Make Your Fertility Clinic Listen

"If you're not a size 5, this doctor does not want to help you."

"After trying to contact the Dr. several times, I realized that no-one at this facility gave a crap, or even pretended to care".

"_____ is the worst doctor one can go to...I wanted to smack him right in his office."

Yikes. These are what negative fertility clinic reviews look like sometimes. These aren't hypothetical examples. They are real reviews of fertility doctors in three different U.S. cities. The reviewers may have needed to vent their frustration. Research from Harvard University shows that the stress and anxiety caused by infertility are equal to that caused by cancer. If you are writing a review about your fertility clinic, you may want to use the opportunity to release some of the tremendous frustration and anxiety. Your doctor or practice may be the person to release that on to. Heck, he or she might even deserve it. If your goal is simply to vent your pain and project that on to someone who may be partly responsible, I understand. I do it too often, for far less serious affairs. I make Delta Airlines feel my wrath on Twitter every time I fly with them. It doesn't solve the issue, but I feel a little better. For couples spending thousands of dollars on an emotionally draining fertility journey, the yearning for vindication must be very strong when they are failed.

Patient or Customer? Self-identity in the business of infertility

Here we are...wrapping up 2015, largely on pause between the major holidays. I'm taking it easy too, so I'm using this blog post to spell out how I can be more helpful to the infertility community in the New Year. That started an honest reflection about how we see self-identities (patients, practices, doctors, me), and what that means about our responsibilities to each other.

"Democracy Is Not a Spectator Sport": The Top 5 Things I Learned at ASRM's 2015 Advocacy Academy

ASRM held its first ever Advocacy Academy in Washington, D.C. on December 9th and 10th, 2015. About 30 ASRM members met to learn more about advocacy at the state and federal levels, for better legislation on reproductive care. Special focus was paid to Congress's current ban on IVF for veterans, and the pending pieces of legislation that would provide that care to our vets. On Capitol Hill, we met with the offices of our individual members. Being new to advocacy in this way, these are the five most valuable things I learned from ASRM's advocacy workshop.

New Research: IVF success impacts fertility clinic reviews. But how much?

I wish I could say that this new research provides us with all of the answers we've sought, but I think we're left with new questions. That's fine by me, I find it encouraging. We've talked about reproductive endocrinologist (RE) and fertility center reviews, and the psychology behind them. This new data helps us understand how success of treatment impacts the rating of a fertility clinic or fertility doctor review.

12 Blogs and Podcasts that Fertility Clinics Should Share with Their Patients

I believe that the fertility centers who provide their patients with the most opportunities for information, connection, and community are those that stand to gain. One of the most common pain-points described by people coping with infertility is not having people in their social circles that can relate to their journey.

For this reason, so many people have bravely decided to share their experiences online, and their content has become invaluable to couples and individuals struggling with infertility. Fertility centers can empower their patients by linking to some of this media on their websites, and even sending new patients home with a printed resource.

The 25 Best Words to Describe REs in Fertility Clinic Reviews

Now, on to the good news.

In an earlier post, I had written about the 28 harshest words that people use to describe reproductive endocrinologists. Paying attention to the words that people use to desrcribe their REs and their fertility clinics begins to offer insight on how we can improve their experience. This time, I made a word cloud of the most common positive adjectives that people use in RE reviews.

28 Scathing Words for REs Across Fertility Center Reviews

If you are a reproductive endocrinologist (RE), you don't have an easy job. I don't mention this to state the obvious, nor flatter you, nor am I referring to surgical talent, study, or training.

It's heir-apparent that one of the most difficult aspects of the role of an RE is serving a population under enormous emotional and mental stress, who are often financially burdened, subject to unfair social pressure, all within great deal of outcome-uncertainty.

The Top 10 Tweets from ASRM 2015

We've just wrapped up an excellent time at the 2015 meeting of the American Society for Reproductive Medicine (ASRM) in Baltimore. It was my very first ASRM meeting, and the only thing I like more than meeting new friends is getting to see old ones.

With so many tracks and sessions over the five day meeting, you couldn't be everywhere at once. But thanks to #ASRM2015's live tweeters, we had people keeping us abreast of what went on. Here are 10 of the most informative tweets from the meeting.

Tribe Marketing For Fertility Centers

If you're not familiar with one of my favorite authors, you may want to check out Seth Godin.

Godin says “A tribe is a group of people connected to one another, connected to a leader, and connected to an idea. A group needs only two things to be a tribe: a shared interest and a way to communicate.”

Most healthcare categories do not have tribes. Dermatology patients are not connected by an idea. They have no shared interest and thus no leader or way to communicate. Couples and individuals struggling with infertility are connected by an idea however. They are connected by the feeling of loneliness and exclusion. They are connected by the feeling that they want to know their problems are human.