Dear Human Resources,

For the record, my boss is freakin awesome! Really, truly, awesome.

I drafted up this letter, based on the sample that RESOLVE offers, and she sent it off to HR. She is one of the big bosses, so maybe something will actually come of this... The RESOLVE website says 65% of employers who provide infertility coverage said they do so because they were asked by an employee.

Dear Human Resources:

I have been contacted by a Company employee who is suffering with the disease of infertility. An estimated 1 in 8 couples have similar difficulties, so I know that this couple is not alone. On behalf of this couple, and all other Company employees who are silently struggling to overcome infertility, I would like to request that you advise me as to the action necessary to include coverage for infertility treatment with the Company health benefit package. I imagine that this might be a larger issue that requires some attention from Corporate and would appreciate your guidance about who in that organization might be most appropriate to contact.

I have been informed that insurance coverage for diagnosis and treatment of infertility is currently excluded from the Company health insurance plan. I have also been informed that California Insurance Code requires insurers to offer coverage of certain infertility treatments (see reference below), which I assume gives the Company an option about whether or not to include infertility as a covered benefit.

I want to be sure that we are providing comprehensive coverage options that both make sense for our employees as well as our fiscal bottom line. A 2003 Harris Interactive Poll indicates that there is broad public support for infertility coverage; 80% of the general population believes infertility treatment should be covered by insurance. Because of this, I believe that offering this comprehensive health benefit will support our hiring and retention strategies.

Often employers believe that adding an infertility coverage benefit will increase health care costs. However, recent studies indicate that including comprehensive infertility coverage in a health benefit package may actually reduce costs and improve outcomes.

For example, a recent employer survey conducted by the consulting firm William M. Mercer found that 91 percent of respondents offering infertility treatment have not experienced an increase in their medical costs as a result of providing this coverage. In fact, the cost of infertility services as a percent of the total health premiums went down after the 1987 Massachusetts mandate. (Study by Griffin and Panak, Fertility & Sterility, 1998). 

According to the American Society of Reproductive Medicine (ASRM), 85%-90% of infertility cases can be treated with conventional medications. In vitro fertilization accounts for less than 3% of infertility services.

Often patients select treatment based on what is covered in their health benefit plan rather than what is most appropriate treatment. Comprehensive infertility coverage may actually reduce premium expense by as much as $1 per member/per month by allowing employees to choose the most appropriate and effective treatment, rather than more expensive less effective procedures that are covered by insurance.

Medical outcomes are also better for couples whose health insurance includes infertility coverage. The rate of multiple births, which often result in high-risk pregnancies, delivery complications, and extended stays in the NICU, is lower in states that have mandated infertility insurance. Furthermore, the improved mental health and general productivity of employees who are able to access timely and appropriate infertility treatment cannot be underestimated.

I would like to be sure that our Company health insurance plan is as cost effective and comprehensive as possible to meet our staff’s needs as well as our own for a healthy, motivated, productive workforce. Please let me know if you would like any additional information on this issue. I look forward to your reply.


Sincerely,
Foxy's Super Awesome Boss


cc: RESOLVE – The National Infertility Association, 1760 Old Meadow Rd., Suite 500, McLean, VA 22102

Cal. Health & Safety Code § 1374.55 requires health care service plan contracts that cover hospital, medical or surgical expenses on a group basis to offer coverage for the treatment of infertility, except in vitro fertilization. The law requires every plan to communicate the availability of coverage to policyholders. The law defines infertility, treatment for infertility and in vitro fertilization. The law clarifies that religious employers are not required to offer coverage for forms of treatment that are inconsistent with the organization's religious and ethical principles.

Cal. Insurance Code § 10119.6 (1989) requires insurers to offer coverage of infertility treatments, except in vitro fertilization. Infertility, in this case, may be a result of a medical condition or may refer to the inability to carry a pregnancy to term during a one-year or more period of time. Infertility treatment refers to diagnosis, diagnostic tests, medication, surgery and gamete intrafallopian transfer.

Her son was conceived with IVF

I have been so insanely busy. It is great to have the energy again to keep up with the life that I want and enjoy living. But I miss having time to write here, and to keep up with my reading.

****
For the record, I have to say that I absolutely love the klono.pin that my dr. prescribed me a few weeks ago. It magically calms the crazy swirling thoughts that apparently were sucking so much of my energy up. and also, at night, I actually fall asleep instead of laying awake for hours, and I sleep so well and wake up feeling rested. I seriously love this stuff. My dr told me I could take two pills every day (morning and night), but I only take half every other day because I am afraid that I'll get addicted or something. I read some scary stuff on the internet about this medication, but feel like it has given me my life back.

****
There is a lady who I know. I met her some time ago when we were volunteers on a local school district committee. We were like-minded in our approach to solving the problems facing our committee, and spent many evenings in the parking lot talking after the meetings. She was older than me, and had a child in the schools. We were in very different places in our lives, but there was always a connection. The committee ended and we went out separate ways, crossing paths every so often. She eventually ran for the school Board, while I ended up serving on another district committee that advises the Board.

The District has been in desperate need of funding and finally put up a school bond measure for the November election. I was asked to be a signatory on the ballot statement in support of the bond, along with a few other very prominent community members. I am not sure what makes me qualified to be at the same status of these other folks - former mayors and local philanthropists - true community leaders. But they asked me, and I said I'd be honored.

In the last week, I've ended up working incredibly closely with this Board member, nearly every minute that I am not at work, to campaign for the passage of this school bond. She really is awesome. And then, on Thursday, as we walked to our cars after a late meeting, I shared that it had been a really difficult year for ML and I.

I broke the silence and said "we found out last summer that we can't have kids."
and she said her son was conceived with ivf.
she understood. she really understood.
and I realized that she also lived with the silence.

I can't stop thinking about how glad I am that I said something to her. Why would she have ever brought infertility up to me?

I want to hug her and tell her that our exchange means the world to me. Instead I wrote her a card today - it just said that I think she is awesome and am so grateful that we are friends.

It seems that I am going to be sucked into this campaign. I keep telling people this bond will benefit my someday kids. The more I refer to them, the more real they become, my Someday Kids, My Someday Twins. The need for this Bond is so great. And my need to be distracted is pretty big right now too. ML has his FNA Biopsy next Wednesday. We'll get results back by October 15th. That will be a tough two week wait for me, and I have every expectation that I'll fall apart when we get the results. So having something else, something bigger than me, to focus on might be a really great plan.

My Puppies. 

*****
Much love to everyone visiting from ICLW. I promise to come visit your site in the next few weeks, and make up for all my missing comments during ICLW. Your comments pop up on my phone throughout the day and make me happier than any words can express. One more picture of my puppy's for your viewing pleasure.  Love to all!

Gold Star for the CDC

The CDC is paying attention.  :)


Today the Centers for Disease Control and Prevention (CDC) along with the Male Reproductive Health Alliance is hosting a stakeholder meeting entitled, Advancing Men’s Reproductive Health in the United States: Current Status and Future Directions in Atlanta, GA. The meeting will highlight multi-disciplinary approaches to improve men's reproductive health outcomes through public health activities. The meeting’s agenda includes presentations and discussions by stakeholders regarding strategies used to address male reproductive health problems. Participants will represent government agencies, national organizations serving health professionals or consumers, as well as academic programs involved in promoting men’s reproductive health.


I also wanted to make sure that you all saw the new CDC webpage about Infertility. I posted a while back about the email exchange I had with the CDC asking them to revise their website to include reference to Male Factor Infertility, and THEY LISTENED! The new site provide a much more balanced picture, and hopefully will help raise awareness about the importance of male reproductive issues as well.


UPDATE:
Check out Dr. Turek's post about speaking at the CDC conference. Gold stars for Dr.T too!

Little Bits of Advocacy - CDC Website

Imagine the power if we all took tiny little steps to advocate for one another and by doing so raised the awareness about infertility to the highest levels of the medical profession, researchers, and decision makers. This simple little email exchange led to a review and update to the Centers for Disease Control website to include information about male infertility! 

Foxy is feeling like a little rawk-star today :)

*****

To Centers for Disease Control:

My husband and I recently learned that our efforts to start a family have been unsuccessful as a result of severe male factor infertility. To say that we are devastated by this diagnosis does not begin to communicate the emotions we are experiencing. As this is a highly personal and private matter, we prefer not to share our personal information at this time, however I can be reached via email at foxypopcorn@gmail.com.

Trolling the internet for resources, I came across the Centers for Disease Control website on Assisted Reproductive Technologies (http://www.cdc.gov/ART/index.htm). I can't help but wonder who wrote the content and how it ended up getting published on the internet. Specifically, I am offended by the implication that infertility is a women's problem. The site only references the number of infertility-related visits that women make every year and describes infertility services as “medical tests to diagnose infertility, medical advice and treatments to help a woman become pregnant, and services other than routine prenatal care to prevent miscarriage.” I can assure you that infertility affects both women and men. My research has revealed that causes of infertility are split nearly evenly between genders, with 40% female factor infertility, 40% male factor infertility, and 20% combination of bothh male and female factors. I can also assure you that infertility services include medical tests and treatments that assist a man's sperm in finding its way out of his body so that he can father a child. I am not suggesting that there was any mal-intention in the description provided on your site, however it is disappointing to see this type of mis-information being espoused by the Department of Health and Human Services.

I respectfully request that this site be reviewed for accuracy of both the factual information being provided and that it be edited to convey and imply the fact that infertility affects both men and women.

I appreciate your attention to this and look forward to your reply and update to the website. I have cc'd RESOLVE with this email and information, and trust that they would be pleased to assist you.

Sincerely,

A devastated couple (Foxy)

*****

Dear Foxy Popcorn,

Thank you for visiting the CDC website. Your inquiry was forwarded to
CDC's Division of Reproductive Health for a response. I am sorry to hear
that you and your husband are experiencing infertility, and I understand
your concern regarding the content on this webpage: http://www.cdc.gov/ART/index.htm and apologize if it offended you. That
is certainly not the intent, and we are reviewing the content and will
include more data about male infertility so this paragraph is a more
comprehensive picture on the burden of infertility.

The introductory paragraph and data were taken from the National Survey
of Family Growth  http://www.cdc.gov/nchs/nsfg.htm which was historically
conducted with women only; however, the most recent survey does include
men and has some data on male infertility, so we will be sure to add
this to our ART homepage. In addition, we have published a recent
journal article on male infertility which may be of interest to you (it
is attached). CDC has also convened an inter-agency working group to
better address infertility as a public health problem. For more
information, please see this webpage:http://www.cdc.gov/ART/infertilityPublicationPG1.htm

Again, please accept our apologies and we thank you for bringing this to
our attention. We will work on updating our webpage. If you have any
other questions or comments, or would like a copy of the ART Success
Rates Report ( http://www.cdc.gov/ART/ART2006/index.htm), please let me
know.

Sincerely,

Kelly Brumbaugh, MPH, CHES
Health Communications Specialist
CDC - Division of Reproductive Health
ph: 770.488.6344, fx: 770.488.6253 www.cdc.gov/reproductivehealth

*****

Dear Kelly,
Thank you so much for your response to my comments about the need to include information about Male Factor Infertility on the CDC website. I understand that until recently there were not many options available for couples who were challenged with MFI, but ISCI and TESE procedures can now provide good options. When my husband's physician first reviewed the results of his sperm analysis, which had a zero sperm count, he abruptly left the room to call a urologist. Then he returned to inform my husband that some men just don't make sperm. My husband's physician, and our local urologist, were not educated about male fertility processes. Their conclusion that a zero sperm count was indicative of no sperm production is the type of mis-information that I'd like to challenge - in the CDC website, and other forums. Thank you for your help in raising awareness and reducing the stigma about male factor infertility.

Do you know if the CDC has any information about male fertility treatment, specifically TESE, ISCI, FNA mapping, Biopsy's, etc? I am needing to evaluate different reproductive urologists and treatments, but can only find impartial information about IVF centers.

Please let me know if there is any way that I can be of assistance to the CDC inter-agency working group on infertility. I can speak to the emotional and financial impact that this diagnosis has had on my husband and I, and our extended family.

I really do appreciate you thoughtful reply, and assurance that the content on the CDC website will be reviewed and updated to reflect current options.

Sincerely,

Foxy

*****

Hello there,

Unfortunately, we do not have much information on infertility to offer yet. Our focus has been on using ART as a treatment. It was just this past year that we've pulled together the inter-agency working group to address infertility as a broader issue. We often refer folks to the following organizations for more infertility information:

www.resolve.org

www.theafa.org

http://medlineplus.gov/ - search for 'infertility'

http://www.auanet.org/content/homepage/homepage.cfm

http://www.ncbi.nlm.nih.gov/pubmed/ - search research published in medical journals

www.sart.org

Sorry we cannot be of further help, but hope you can find the information you're seeking. In the future, we hope to have more to offer folks. Best wishes to you.

Sincerely,

Kelly Brumbaugh

Health Communications Specialist
CDC - Division of Reproductive Health
ph: 770.488.6344, fx: 770.488.6253
www.cdc.gov/reproductivehealth

Whale Breath

As a follow-up to that awesome training I did two weeks ago I had a meeting planned yesterday to meet with a few of the other participants. You know how there are people who you feel so lucky to have crossed paths with - I feel so grateful to get to work with these two individuals. They are social scientists who have the most brilliant way of understanding group dynamics, group process, and how to actually get things done. We all work on a community collaborative as representative of our various organizations. They are a bit older and more experienced than I and really awesome mentors.

So yesterday morning I get an email asking if we could meet on a whale watching boat instead of at the office! Umm, Heck yeah! I was even able to bring my two girl cousins who are visiting for the weekend. So we bundled up and loaded up on the boat. As we headed out into the Pacific Ocean, the social scientists and I had the most productive discussion about how to proceed with our work. Before too long we were awed by the spouts of humpback whales. Pretty awesome to see these huge creatures breathing just above the water line.

My sweet cousins have never before been on a boat and were as impressed as two teenage delinquents could be expected to be.

Then we got lucky, the captain spotted a blue whale. We motored along to get closer and were overcome by the nastiest smell. Apparently Whale Breath is really gross smelling! We were in the vicinity of the largest animal in existence. And then it spouted - 30 ft into the air! Just as awesome was seeing it dive back down into the sea. I found this video on YouTube - not from our trip, but just as amazing. The span of their tail can be 25 feet wide!

At the training I had a fun conversation with the lady social scientist about wanting to tour all of the local outdoor fire-pits and write up reviews for them to post on a blog. The local Spa's too. I figure it would be a great excuse to explore my community a bit more and encourage me to keep writing.  So as we were boarding the boat, we started talking about social networking and the blurring line between privacy and self censorship. They were saying that they are selective about what they say in their social networks, because of the public nature of their work, yet we agreed that writing was a powerful process of self-reflection that allowed us to see problems and ourselves in a different light.

I don't know what I was thinking, but I confessed. I confessed to these friends that I had a secret blog, one that no one knew about, one where I didn't have to self-censor. I don't know why I told them, other than that it was an itty bitty teeny weeny step towards being more open about this whole experience.

Along the lines of being more open, and little bits of advocacy, I was at a healthcare forum last week with our Federal and State elected representatives. They were taking questions from the audience on little notecards. The question I submitted was about infertility mandates on health insurance, as a way to reduce the rates of multiples who require expensive NICU stays. At one point after I turned in my card I had the urge to run to the podium, interrupt the dialogue, and take back my card. I suddenly didn't feel strong enough to listen to then answer the question. A few deep breaths and I got my composure together. They ran out of time and never got to my question, but I am sure that the Reps at least read the remaining pile of questions and saw mine. Maybe it planted a little seed in their minds.

My awesome boss submitted the letter I prepared asking my employer to switch to an insurance plan that covered infertility services. She was gone last week, but we received a memo that the insurance rates will be increasing. Isn't that normally the same time that the whole insurance package is reviewed and the opportunity to make changes? I took the liberty of calling HR to follow up on her letter and ask them if now was the time to consider changes. I was informed that they were researching and preparing a response to my boss's letter. God, it would be so freakin awesome if I could get my employer to make a change like that! I would feel like superwoman!

Before I sign-off I want to send the biggest congratulations and lots of love to Julie and Jeff who are PREGNANT!!! 

Little Bits of Advocacy

My employer's group health insurance plan specifically excludes coverage for anything related to the diagnosis and treatment of infertility. I live in California and work for one of the largest employers in my County. I work for the boss, well, one of the bosses. If anyone can fix our insurance, she can, right?


I told her about our struggles last summer, when I was in Zombie condition. She is wonderful, understanding and kind. She knew when she hired me that having a family was my number one priority and that I would likely end up working part time at some point to be with my kids. She says the nicest things when I apologize for being distracted by our struggle, like, "Foxy, you are more effective now than most people when they are at 100%." It is nice and I know that she would do anything she can to support me.


I am super private about our infertility with everyone else at work. I'd originally called HR to ask about the options for changing our insurance, but didn't feel comfortable going into any details about our situation. I work very closely with the HR folks on work related stuff, and really don't need them knowing my personal business. I've been pondering how I can help my boss ask the right questions without revealing that I am the reason why.


The RESOLVE website has a generic letter to employers, and encourages all of us to send the letter to our employer and encourage them to change their insurance policy. There is apparently good research to show that infertility coverage actually results in lower premiums, higher employee productivity, etc...  So I took the letter, customized it for my workplace, and drafted it as though it was coming from my boss at the request of an anonymous employee. I've had the draft letter on my desk for two weeks and finally took a deep breath and pitched it to my boss on Friday. She could tell it was a hard thing for me to ask her and let me change the subject immediately.


I'd worked with a state lobbyist in the past on maternal health issues. She called me earlier this year to see if I would be willing to testify about those issues in the Health Reform  hearings. I let her know that I would be happy to testify, but confided that it would be hard considering our current struggles. Apparently she is also a lobbyist for fertility doctors. She told me all about some efforts that were underway to try and convince insurers to include coverage for IVF as a way to save on NICU costs. An insurer who covers IVF can limit the number of eggs that are transferred, lowering the 'risk' (or so they call it) of multiples. Multiples are more likely to spend time in the NICU, which is significantly more expensive than IVF.  Someday I hope that I will be strong enough to testify in support of this rational and logical approach to insurance coverage.


The thing is I just know that My Lover and I are not the only ones struggling with this. If one in eight couples experience infertility, then there must be many more in my workplace who are silently suffering. I am in a position to change things. We are all in a position to change things, when we are strong enough to speak up and have our voice heard.