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