Infertility Bashing: What Can We Do Win the Public Relations War?

Stop the Infer­til­ity Bash­ing and Let’s Win the Pub­lic Rela­tions War
I’ve noticed it for a while, but it seems to be get­ting worse and also a lit­tle scary. And I don’t think any other field in med­i­cine, even plas­tic surgery, comes under the degree of intense scrutiny that infer­til­ity does. Maybe I have this per­spec­tive because I’ve been work­ing in infer­til­ity pub­lic rela­tions for almost 14 years, so I remem­ber when it was rel­a­tively easy to get pos­i­tive media cov­er­age for the clin­ics and orga­ni­za­tions with which I worked. Reporters gladly inter­viewed happy fam­i­lies with their mir­a­cle babies and wrote uplift­ing arti­cles about the won­ders of assisted repro­duc­tive med­i­cine. In gen­eral, the press lauded the infer­til­ity field’s accom­plish­ments as progress. There would be the occa­sional blip, i.e., the “cloning” cri­sis or the birth of the McCaughey sep­tu­plets, but we were able to turn those deba­cles into teach­able moments, espe­cially in Mass­a­chu­setts where we could dis­cuss the mer­its of man­dated infer­til­ity insur­ance cov­er­age that dis­cour­aged the inap­pro­pri­ate use of less costly, self-pay pro­ce­dures that resulted in higher order multiples.

Los­ing Con­trol of the Mes­sage
But those were the days before self-inflicted wounds like Octo­mom, Jon and Kate Plus Eight, and the rogue agen­cies that exces­sively com­pen­sate egg donors and before con­trol­ling health care costs was on everyone’s mind. Now news­pa­pers are going the way of the dinosaur, the media in gen­eral is veer­ing towards tabloid sen­sa­tion­al­ism and the Inter­net allows every­one to express an opin­ion, whether informed or mis­in­formed. Some­where along the way a seis­mic shift occurred in both media and pub­lic per­cep­tion that infer­til­ity treat­ment in gen­eral and infer­til­ity treat­ment insur­ance cov­er­age in par­tic­u­lar are actu­ally prob­lem­atic for soci­ety and are a cause of the ris­ing cost of health care. The mes­sage of joy about cre­at­ing fam­i­lies, (not to men­tion that fam­ily growth stim­u­lates the econ­omy and cre­ates the next gen­er­a­tion of work­ers to fund Social Secu­rity, etc.) has become lost. The tone has become decid­edly unsym­pa­thetic. No, I don’t have sta­tis­tics from a media watch­dog orga­ni­za­tion and, yes, pos­i­tive expo­sure still is hap­pen­ing in all parts of the coun­try and on national out­lets, but my gut feel­ing says that the amount of neg­a­tive bash­ing is on the rise.

This is espe­cially true in Mass­a­chu­setts where the land­mark, 22-year-old Mass­a­chu­setts Infer­til­ity Man­date has been under attack in recent months from the likes of now Sen­a­tor Scott Brown and with the recent pub­li­ca­tion of a front-page Boston Globe arti­cle about health insur­ers notic­ing a trend of indi­vid­u­als buy­ing health insur­ance cov­er­age a few months before they need “…an expen­sive elec­tive pro­ce­dure that can be planned ahead, such as knee or hip replace­ments or fer­til­ity treatments.”

It is bad enough that the Globe arti­cle (http://www.boston.com/news/local/massachusetts/articles/2010/04/04/short_term_customers_boosting_health_costs/) was full of holes and did not have any input from patients or pro­fes­sion­als in the field, but what is even more dis­turb­ing are the very harsh pub­lic com­ments that fol­low the arti­cle. The posts ranged from call­ing infer­til­ity treat­ment a lifestyle choice to… deny­ing it is a med­ical condition..deriding how much it costs to.. mak­ing it seem like the health care cri­sis would be solved and all med­ical eth­i­cal dilem­mas would van­ish if soci­ety banned infer­til­ity treat­ments.  But these com­ments are not new. We have all seen them. What both­ers me is that this is becom­ing the norm and that no other med­ical issue receives this type of derision.

So how did the infer­til­ity field go from being mir­a­cle worker to health care scape­goat? How can a group that rep­re­sents only 1 in 8 peo­ple of repro­duc­tive age gar­ner the sup­port it needs? I have out­lined the prob­lem, but what are the solutions?

Evok­ing Empa­thy and Ral­ly­ing the Pub­lic
There is a bright side to this pub­lic rela­tions cri­sis. The infer­til­ity com­mu­nity, led by patient orga­ni­za­tions like RESOLVE of New Eng­land, RESOLVE: The National Infer­til­ity Asso­ci­a­tion, and the Amer­i­can Fer­til­ity Asso­ci­a­tion, has orga­nized and become con­nected in more ways than ever before. RESOLVE of New Eng­land has been on the fore­front of lead­ing the cam­paign to update the def­i­n­i­tion of infer­til­ity in the Mass­a­chu­setts Infer­til­ity Man­date so that insur­ance com­pa­nies do not use out­dated lan­guage to deny cov­er­age for recur­rent preg­nancy losses or to reset the clock that delays treat­ment for women over 35.This year’s National Infer­til­ity Aware­ness Week was a tour de force exam­ple of using the power of both social and main­stream media to let the pub­lic know that infer­til­ity is a med­ical con­di­tion deserv­ing atten­tion, resources and empathy.The AFA has bro­ken new ground by pub­li­ciz­ing infer­til­ity pre­ven­tion aware­ness among 20-something women as well as GLBT fam­ily build­ing. Count­less blog­gers and Twit­ter and Face­book par­tic­i­pants have ral­lied to spread the word about infer­til­ity news sto­ries and have will­ingly shared their own sto­ries to make the pub­lic cog­nizant of their strug­gles. Fer­til­ity clin­ics, egg dona­tion and sur­ro­gacy agen­cies and other fer­til­ity providers have been involved at both the local and regional lev­els. There is a lot to celebrate.

Inter­nally our com­mu­nity seems to be more united and orga­nized than ever before. But there are many con­cen­tric cir­cles of sup­port around us, com­prised of indi­vid­u­als who may be wait­ing for us to ask them for help. We need to step beyond our usual com­fort zone and reach out to them. How? First, let’s rally the men and women who have pre­vi­ously bat­tled infer­til­ity. Many clin­ics keep lists of for­mer patients, espe­cially those who have suc­ceeded in con­ceiv­ing chil­dren. They rep­re­sent the first group of indi­vid­u­als who would sup­port the Mass­a­chu­setts Infer­til­ity Man­date, which helped them build their fam­i­lies. Next, con­sider our fam­ily mem­bers, all those would be grand­par­ents, aunts, and uncles, and dear friends. These are peo­ple who love some­one who is expe­ri­enc­ing infer­til­ity. Then among the pop­u­la­tion at large are the truly empa­thetic — those who under­stand that their chil­dren are their most pre­cious gifts, want oth­ers to be able to expe­ri­ence that same joy, and real­ize that putting fam­i­lies first is the best invest­ment soci­ety can make. Sup­port and advo­cacy groups for other med­ical con­di­tions and dis­eases like breast can­cer and HIV/AIDs are orga­nized around this model of sup­port for both pub­lic rela­tions and fund raising.

So when we add the num­bers, we are way more than 1 in 8. The sup­port is there for the ask­ing. We only need to mobi­lize what is already there.

 This post was pub­lished in the RESOLVE of New Eng­land newslet­ter in 2010.