Ken Mosesian

Dear Friend,

I'm writing to share with you the changes - and the progress happening at The AFA. As many of you may know, Pamela Madsen, The AFA's founder, recently resigned her position as Executive Director. As she stated in her farewell blog, "I have given everything that I had to give." We're grateful to Pam for her contributions and for building The AFA to this point in its growth and development.

For some of you, Pam was The AFA, and you're naturally concerned about the future of the organization. I hope this message will help to alleviate those concerns and demonstrate that The AFA is not only surviving, but thriving.

Though Pam is no longer with the organization, the rest of the staff remains, fully committed to taking the good work that has been done and building upon it. I've included a summary of everyone's bio's below. Melinda and Corey have been with The AFA since its inception. Anne has been a communications adviser/writer for The AFA for more than six years and in the last year she has become the full-time policy and programming consultant. Lisa has been on board for over three years, and I have been a part of the organization for two years.

For the past two decades, I have worked with for-profit and non-profit companies in growth and transition phases, helping them move forward by creating smart strategic plans, developing staff and board leadership, and designing effective communications plans. I have also helped raise millions of dollars for non-profit organizations nationally. It is those skills that I bring to The AFA as Acting Executive Director. The board, acting according to non-profit best practices, is conducting a nation-wide search for a new Executive Director, and has invited me to apply for the position, which I intend to do.

In many ways, we're continuing to do much of what we've done before: education, advocacy and support. We're answering support line calls, hosting weekly online chats, providing phone coaching, handling hundreds of media calls, welcoming over 500 new members to our website every month and producing an education conference in New York. Our "Illuminations" events will expand this year to Los Angeles, San Francisco, and New York, and there will be a Gala in New York as well.

And we are an organization that is growing and changing. While we will continue to serve patients with reproductive difficulties, we'll also be adapting a more expansive consumer-focused business model and deepening our mission to help lift the conversation about fertility into the larger conversation about reproductive health care. Three primary areas of emphasis include STD prevention in order to protect fertility, exploring the relationship between fertility and the environment, and continuing our work with the lesbian and gay communities in their efforts to create families.

We've also produced the first education conference in San Francisco this past February, and have received great feedback for the quality of education that we provided and the relationships that we built. We're going to be returning to San Francisco with the second annual conference in February of 2009.

We are committed to maintaining our high standard of written materials and to refreshing our soon-to-be updated website on a daily basis. You'll also be noticing a more vocal AFA in 2008. We'll be taking stands on important issues and building community online to move those issues into everyday conversation and to inspire more activity among our members.

We are working to coordinate policy, communications, programming and fundraising in a seamless way, so that our work on every level makes clear sense. And we're more fully integrating our international work through WorldFAM with our work here at home.

On a practical note, we're expanding our fundraising to include a complete development program of major gifts, foundation grants, direct e-mail, events and corporate sponsorship.

Through it all, we continue to need all of you to support us in the work we do. We need your expertise, we need you to speak at conferences, we need you to contribute articles, we need you to participate in chats, and we need your insights into the fields of reproductive medicine and health care. In short, we need you to continue to be part of our team.

My promise to you is simple. We will never promise more than we can deliver, and we will always deliver what we promise with integrity and the highest quality.

Please feel free to contact me if you have any questions at: Ken.Mosesian@TheAFA.org.

With my best regards and great thanks,

Ken Mosesian
Acting Executive Director

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Ken Mosesian, Acting Executive Director. A veteran consultant specializing in strategic planning, leadership cultivation, best practices and diversity programs in both the corporate and nonprofit sectors, Ken brings those honed talents to The AFA. Since joining, Ken has been deeply involved in strategic management and planning, board development and training, fundraising initiatives and foundation/corporate outreach. He lives in Phoenix, AZ with his long-time partner, Bob.

Anne Adams, Director of Programming & Policy, the most recent addition to the AFA staff, is a seasoned political and social issues journalist writing for The New York Times, The New York Daily News, The New York Post, New York Magazine and USA Today. In her current post, Anne oversees the creation of educational materials and timely publications; develops fresh service and outreach initiatives;

and handles policy positioning and advocacy. Along with Ken Mosesian, she’s an integral member of the management team. A Brooklyn, NY denizen, Anne writes fiction, practices yoga and is the grateful mother of her daughter, Samantha.

Melinda Micciola, Director of Operations, manages the complex daily operations and finances of The AFA. She began her service with The AFA as a volunteer in 1996 after struggling for four years with reproductive difficulties and finally conceiving her daughter Vanessa via IVF and her son Alex. After two years of volunteering, Melinda was hired to keep the organization running, first as Office Administrator and now Operations Director. Prior to joining The AFA she was an Assistant Vice President for Citicorp Industrial Credit managing a staff of 17 in their accounting department.

Lisa Van Ness, Project Coordinator, Lisa joined the The AFA staff in February of 2006, bringing seven years experience in

the field of reproductive medicine as a Patient Service Coordinator and as Assistant to the Director of Embryology and Andrology at a large IVF Program in the northeast. Since signing on with The AFA, Lisa fields member queries, handles the support line, assists in the coordination of events and facilitates the daily business functions of the organization. Lisa enjoys boating, camping and car shows, interests she shares with her husband, Dan and daughter, Melissa.

Corey Whelan has served as the Director of Development for The American Fertility Association since its inception. Prior to that she sat on their board of directors as Secretary. Corey has been a long time advocate for women with PCOS and has lectured on nutrition and physical fitness, and their impact on fertility potential. She is also the coordinator of The AFA's educational conferences and chat series. Corey is grateful to be the proud mom of 12 year old twins conceived through IVF.

First Impressions:
Your Practice Profile and Patient Satisfaction
Alan S. Penzias, M.D.

Alan S. Penzias, M.D.

How, then, do people choose a practice or doctor that best suits their needs? Part of the answer lies in knowing what questions they are going to bring to you and your center.

Increasingly, potential patients are coming in to centers armed—or should be armed—with a sophisticated level of background knowledge that will inform their interview of you and staff. Some of the research they’ve done is solid and reliable. Some of it is simply unreliable hearsay culled from a chat room or message board. Your goal should be to provide a friendly, clear and candid practice profile. With this information patients can make the decisions in which they feel confident thus reducing their potential for disappointment at the same time boosting their comfort level with you and your staff. That, in turn, creates loyalty and staying power.

What They Should Know About You:

Let’s start with the range of fertility services. Do you offer everything up to and including IVF? Does you center provide specialty services such as donor egg IVF; gestational carrier IVF; pre-implantation genetic diagnosis (PGD); embryo freezing; donor insemination for single women or lesbian couples?

What about your program credentials? Provide patients with:

• The number of doctors in the practice
• How many have completed fellowship programs in reproductive endocrinology/infertility following a residency in obstetrics and gynecology
• How many practice doctors are board-certified both in ob/gyn and reproductive endocrinology/infertility
• Membership in the Society for Assisted Reproductive Technologies (SART)
• Has the laboratory director achieved High Complexity Laboratory Director (HCLD) accreditation
• Whether or not the practice conducts research studies that afford some patients treatment at a reduced cost

Are your medical services offered seven days a week including holidays? At which locations and hours? You should also be clear about the speed with which calls are returned and who will return them. Give them clear information about your practice style and whether or not you provide team or individual care.

What about complementary care? Are counseling, acupuncture, and massage among other possibilities offered on site? If not, do you have a stable of reliable allied professionals to whom you can refer patients with confidence?

Is there a financial counselor on premises? Do you offer shared risk program?

For most of us this information seems so baseline that we assume most patients will have done this research. However, this is a very stressed demographic and a clear presentation of your practice profile will go a long way to engendering ease and trust – two vital components of patient retention.

As consumers of fertility treatment become much more savvy, they will want to know about pregnancy rates in general but more importantly, how your published rates apply to them. Increasingly patients are parsing the numbers in the SART/CDC report wanting to compare results among people with similar fertility issues, whether it’s age, male factor, PCOS or any of dozens permutations of underlying pathologies. They will want to know if you reject patients and if so on what grounds.

Even other elements of care which many practices don’t yet pay attention to can have a direct effect on patient satisfaction. They include offering web-based patient resources, email communications and printed materials for those patients with limited or without Internet or computer access.

Summary: This list of topics and questions is just a start. Remember, in this field everyone is encouraging patients to ask questions. Shyness doesn’t serve them. Or us. When we offer up easily accessible and digestible information about our practices, we are demonstrating respect for the patients and extending an invitation to them to partner effectively in their care. While every program pays lip service to patient satisfaction, we must take steps from the very beginning to establish a tone of trust and comfort. Those are the patients who are likely to stay with the practice.

Dr. Alan Penzias is a reproductive endocrinologist, Associate Professor of Obstetrics, Gynecology and Reproductive Biology at Harvard Medical School and Director of the Fellowship program in Reproductive Endocrinology and Infertility at Beth Israel Deaconess Medical Center. His professional experience, expertise and research have focused on the “patient friendly” approach to infertility treatment, removing barriers to care through innovation and outcomes oriented research.

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The Integrative Care Imperative: Satisfied Patients
Debra St.Lawrence Sussman, MA

Debra St.Lawrence Sussman

In a word, yes.

Clinical research has clearly established that when individuals and couples avail themselves of the comprehensive emotional and physical support embodied in complementary care, the chances of conception markedly improve. This information—and acting on it—is critical to the doctor/patient relationship, patient retention, and preserving women’s fertility.

Studies have found that women with acute and chronic stress from fertility treatment and medical procedures had 20% fewer eggs retrieved and 19% fewer eggs fertilized. Pregnancy rates, live birth rates and birth weight were adversely affected.

The culprits, the stress hormones cortisol and catacholomines, release from the brain through the nervous system. They attach to muscular receptors on cells throughout the body. They target organs, exhausting the adrenal glands, causing suppression of the hypothalamus, instigate hormonal changes, hypertension and muscle tension. Significantly, they suppress immunity and reproduction (Fricchioni, 2004).

Armed with findings such as these, programs like the Mind Body Institute, in growing partnership with fertility care providers, have been working to establish a medical model for Ob-Gyns and Reproductive Endocrinologists that integrates stress physiology and complementary care in treatment protocols.

A 2004 study indicates 40% of couples going through infertility treatment qualify for a psychiatric disorder. They range from generalized anxiety due to a medical condition to major depression. Researchers found those psychological states compromise decision making, ignite relationship conflicts, provoke insomnia and apathy. Anxiety and depression decrease executive functioning and nutrition, and spark a host of physical symptoms.

Research indicates fertility patients experience levels of depression and anxiety equal to cancer, HIV and heart disease (Domar, 1993). While medical practices routinely and actively incorporate emotional support and complementary care into treatment for those diseases, fertility healthcare providers find this support to be out of their scope of practice and need to refer their patients to allied professionals.

Legitimizing the compromised fertility experience as a health crisis is key to optimizing the outlook of any given couple. With each cycle they undergo, they are primed to gain knowledge about their bodies and their responses to stress and the protocols.

Patients report when doctors refer to or incorporate complementary health into their practice they are better equipped to deal with the unpredictability and failure of medicine to deliver a child. They report they feel their doctor has their best interest in mind.

A relatively constant stream of media reports on the personal experiences of women of all ages who benefit from complementary care reinforce the growing acceptance of these techniques. High-profile personalities such as Brenda Strong, Brooke Shields, Courtney Cox and Christie Brinkley use their celebrity platform to educate others about mind-body precisely because it worked for them in their reproductive difficulties.

With demand for complementary services soaring, the key is to establish a coherent model of patient and provider education and programming to seamlessly integrate such care into conventional medical fertility protocols. The goal is to maximize the positive patient outcomes—even if the desired goal of a take-home baby isn’t achieved.

Incorporating a comprehensive program with referrals to experts is responsible patient care. Why is this not common practice?

As one doctor at a prominent University clinic put it: “Stress reduction alone cannot treat the patient. Medical intervention is widely and judiciously used. Complementary care is in its infancy in terms of empirical evidence to stand on its own. Most doctors don’t understand the collaboration in healthcare and therefore discount the importance of mind-body.”

Through The Patient
People in treatment, however, feel differently. Kathy Younger reports that she, like many others, “doctor shop” to seek an OB-GYN and Reproductive Endocrinologist who normalizes her stress and has her overall health in mind. “Doctors realize their patients seek answers and due to consumer demand, are starting to incorporate and refer to complementary health as a marketing opportunity within their practice.”

“That the RE practice helps me normalize stress, I perceive that my doctor has my best interests at heart and hasn’t missed a thing,” Younger says.

When a couple enters an RE’s office after one year of unsuccessful attempts, they are panicked. They focus on the problem and not the solution they are there to seek.

In three different studies where cost was not a factor, over 64% of couples dropped out of treatment due to emotional distress (Olivius, et 2004). Dr. David Meldrum at Reproductive Partners and professionals at many other clinics recommend patients attend a stress reduction program simultaneously or prior to starting treatment. The more anxious and depressed a woman is before treatment, the more likely she is to terminate after one cycle (Domar, 2004).

Patients will go to extraordinary lengths on this journey to parenthood. But doctors must be cognizant that the unforeseen turns the path often takes can make the pressure feel unendurable. Maybe conception takes longer to achieve, or treatment is more costly than planned, or it’s the progression to increasingly high-tech interventions that ratchet up the tension.

The mind-body goal is to provide patients with techniques to keep in check the understandable angst that can compromise treatment.

Julie Nitodian, a “graduate” of the Mind Body Institute’s Fertility Wellness program, said the approach and techniques “…helped me navigate through the difficult decisions and the failures I had along the way and gave me hope as I visualized my success for a baby.” Julie still uses the tools learned as she parents her 5-year old daughter.

Some doctors are incorporating complementary medicine precisely because it is compatible with and augments existing fertility treatments.

If the RE is like the pilot of the plane, stress educators are the stewards making the process a more manageable and positive experience. As a team, they often reach the destination with little to no turbulence.

Providing a comprehensive list of the full panel of tests, both general and advanced, surgeries, and possible drug protocols, educates the patient on the process even if they may or may not ever use most of the tests. Without it no wonder women seek information and answers on the internet, chat rooms, and peer groups only to bring about inaccurate misinformation to dispel.

It can be overwhelming to a patient at first but assuming they have the ability to be educated, it is easier to manage the list of protocols upfront than to manage a stressed out patient after a failed cycle. Perhaps even leaving the patient open to seek another opinion and question the doctor’s credibility no matter how reputable.

Having tools to help minimize the difficulty, positive affirmations, mindfulness in everyday living, good nutrition and looking for the good in their day can
strengthen their reserve. Many times this is the key to success as research indicates a 55% increase in conception rates after using a medical model with mind body medicine.

Women often find themselves abducted into an unknown world, waiting for that magic bullet and cure. Waiting for that perfect strategy, they lose themselves in the process. Many vacations are put on hold due to monitored appointments, and their family and friends proceed into parenthood leaving them behind.

There is hope in helping reduce the unpredictability in treatment through “Fertility Wellness Education”. Conception is one piece of a women’s potential, the other is overall good health, lifestyle, hormones, metabolism/nutrition and stress management. Regardless if a patient is with an OB/GYN or Advanced Reproductive Endocrinologist, knowing the steps and what to expect during treatment and conception gives them the big picture. They can put themselves in the diagram and make accurate appraisals and decisions along the way

Complementary medicine is consumer driven where couples want the best outcome for their investment and optimize their chances.

Medical interventions are highly effective when using complementary medicine. It increases not only the chances of conception, it increases the ability to respond positively to the fertility experience along the way. For example, if a cycle did not end in a pregnancy, is not necessarily a failed cycled as a wealth of information was gained about how their bodies respond.

OB/GYN’s and Reproductive Endocrinologists have the responsibility and opportunity to partner with and refer to support the compromised fertile couple. Early education about complementary medicine and its impact on health can prepare patients to effectively deal with the stressors of treatment resulting in a more satisfied patient and increased patient retention. It fosters a positive doctor-patient relationship and, in the end, increases chance of conception.

By: Debra St.Lawrence Sussman, MA
Executive Director
The Mind Body Institute – A Fertility Wellness Program
(www.mindbodyinfertility.com).
UCLA – 213-688-6119
Newport Beach, CA – 949-412-2466

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