1. Share your own story. As hard as it is to share such a personal story- one involving sex, money and (fertility) drugs- it is a powerful tool in showing people the inequality of coverage and the magnitude of the of the impact on one’s work and personal life. Here is a link to the speech I made to the University of Michigan Regents, a group of elected officials who make decisions for the university I worked for. I addressed them- hands trembling and voice cracking. Writing it down and practicing a few times made it a bit easier.
2. Be your own champion. No one cares about changing this aspect of coverage right now more than you. You have to lead the campaign for change to the end. Being an advocate can be hard work- tracking people down, having hard conversations, lots of emails, strategy meetings and waiting. I started a letter writing campaign in August of 2013, and with the help of many, a change was made before open enrollment for 2015 benefits.
3. Find out who makes decisions regarding changes in healthcare coverage for your company. A common misunderstanding is that the insurance companies contracted by your employer to offer health benefits make decisions regarding health care coverage. Actually, your employer decides what they want their plans to offer. In most cases, the Human Resources department is responsible for what gets covered, but there is one person, likely the VP of HR that gives the final say. This is the person that you want to hear your arguments for why healthcare coverage at your company should include fertility treatments. Find out how they make their coverage decisions. They may be advised by a board of physicians and lawyers, as was the case at my university. Find out who these people are and what is there background. Do they have the expertise needed to evaluate fertility treatments as a covered benefit, or should you advocate that a specialist be consulted? Ask what they need to make their decision and what else you can provide for them. Offer to give them your own research on the benefits of adding fertility treatments to their health insurance plan. Human Resource departments are accustomed to calling actuaries at insurance companies to get quotes regarding how much it would cost to add coverage. Insurance companies can give this information to them relatively quickly- within a day or two- based on the likelihood of people in the covered pool who would need the treatment. Ask for a timeline for a decision and schedule your next meeting. Keep in mind that coverage changes for a given year have to be made before open enrollment (Normally around October/November).
4. Find your allies. In sharing my story and asking for help, I found my infertility struggle was part of a larger issue- one spanning gender, race, class and more. Many people need fertility treatments to start their family- infertile people, military veterans with injuries affecting reproduction, cancer patients, gay and lesbian individuals. Think about more broadly about your specific community and why is this an important issue to them. Reach out to groups and individuals at work who are affected by this gap in coverage. My strongest ally was our Graduate Employees Organization, UM GEO and their Women’s Caucus. They represented the interests of a wide range of people- academics, women, minorities, the LGBT community and more. Here is an Op-Ed I wrote with the help of GEO on who is in need of fertility treatments. Working with my union, I was able to get meetings with two state senators and a university regent who found ways to inform HR of their support of infertility treatment coverage. Here are some examples of who to reach out to: local fertility clinics and reproductive endocrinologists, local infertility support groups, Resolve, local unions, your local government, women’s groups (women’s reproductive law groups, Women in Science and Engineering, Center for the Education of Women, etc.), work-life balance coordinators, student government organizations, LGBTQ groups, military family groups, and cancer support groups. Who you should reach out to is really specific to the community you are a part of. Ask your allies why this coverage is important to them and what ideas they have to help. Be prepared to offer them ways they can help- like signing a petition, writing letters of support to HR, and reaching out to other people that they think could help.
5. Determine how fertility treatment coverage is in line with the mission of your company. Many companies use health care coverage as a benefit to attract and retain high quality employees- often touting that their health insurance is better than their competitors. What kinds of employees are important to your company? In many fields, organizations are prioritizing the hiring of competitive women and minorities. They also strive to be an inclusive companies- emphasizing the importance of supporting LGBT employees. We framed our argument for fertility treatment coverage as an issue that spanned gender, race, class and sexual preference. More and more women delay their child bearing years to be competitive with their male counterparts, and find out they need reproductive assistance when they finally want to start their family. Apple and Google openly acknowledged this by adding egg-freezing as a covered benefit recently. Data collected by the US Census shows that minority women suffer from infertility at a higher rate than Caucasian women. Many individuals in the LGBT community rely on reproductive technologies to have children. Read the mission statement and hiring brochures/websites for your company and find out if offering fertility benefits may be valuable to your company.
6. Understand this issue from the point of view of your employer. Because you are amazing- you probably work for a great company. Assume good intent- and they have a good reason for not having the coverage yet. Maybe no one had ever asked! Find out the concerns that your company has in adding fertility treatment coverage. For most companies- the cost of adding coverage is a huge factor. In your letters or meetings, explain to them that there are hidden costs to not covering fertility treatments and costs are not likely to increase by adding this coverage. Here is a letter that I wrote to the Medical Benefits Advisory Board trying to address my employers main concerns.
7. Offer different coverage options for your company to consider adopting. There are many different levels of fertility treatment coverage. Get familiar with different coverage options and be prepared to argue what type of coverage is important. Some plans offer a maximum lifetime limit on fertility treatments, like 25,000 or 50,000 dollars. Your company could decide to offer a coinsurance at some percentage, like 50 or 80%, for fertility treatments. There might be an option for individuals who need the treatment to purchase a “rider” insurance policy. The most important thing is to ask to be part of the conversation on deciding what gets covered and the details like limitations and exclusions. There are usually age limitations, minimum employment time (for example, you must be employed for two years with the company to qualify for coverage), requirements for an infertility diagnosis that would prevent utilization by the LGBT community, and restrictions for the type of infertility treatments covered (for example, excludes IVF).
8. Find out what else your plan covers that is “like” infertility coverage. Get familiar with your specific benefit booklet. Most insurance plans cover all other aspects of the family planning spectrum: birth control, pregnancy, sterilization, and male sexual dysfunction. Infertility is a disease of the reproductive system but many view fertility treatments as “cosmetic” or “quality of life” medical procedures. Health insurance has a long history of covering more than just life saving treatments- a broken leg will not kill you, but getting it fixed will certainly improve your quality of life. One reason why fertility treatments have not been covered is that the success rates were low and the procedures were considered experimental. However, fertility treatment success rates have improved and are now the standard of care for treating infertility. Bariatric surgery and autism treatment are similar to infertility treatments in that they aren’t a final cure and aren’t always 100% effective, but they are coverage requested and needed by many people.
9. Find out what other companies similar to yours cover with respect to fertility treatments. Get on the HR websites of your competitors and leaders in your industry and download their health insurance benefit booklets. Search for “infertility” and see if it is a covered benefit. As I have been told before, “Coverage of infertility treatment is certainly not an industry standard” but competitive companies often offer it to attract and retain high quality employees. It may be important to your company to match or beat competitors benefit offerings.
10. Reach out to the people who can influence those with the decision making power. Write letters and/or ask for meetings with people who can influence coverage decisions. Share your story and good arguments for adding coverage. Likely they were not aware of the gap in coverage and they might be willing to contact HR in support to adding coverage.
11. What are the concerns of your community about adding coverage? As you reach out to your community, ask people to be honest in their concerns about including fertility treatment in healthcare insurance. We noticed that many of the same concerns were repeated. Take time to research each concern and come up with a “talking point” regarding your stance. Consider writing up a simple “Fact Sheet” specific to your communities concerns. For example, a common concern was “Infertility treatments do not treat a life threatening condition, and should not be covered by health insurance. Why should my costs go up to improve your quality of life?” Here are our answers to those questions in a couple of fact sheets (FAQ and FAQ2) that we prepared and left with people after our meetings.
12. Walk the fine line of enthusiastically spreading awareness and being annoying. I started by writing letters to anyone and everyone who I thought needed to know about this gap in health insurance coverage. When reaching out to community leaders and groups, I was surprised that this was a new and unknown issue to most of the people I approached. Most people didn’t have a strong opinion about it one way or another. They needed time and information to consider the issue. Make sure to provide information that you think they should know. For general infertility information, we relied heavily on Resolve’s resources. Our campaign wrote letters and asked for meetings with the president of the university and hospital, VP of HR, our union leaders, our local senators, university regents, work-life balance coordinators, student governments, women’s groups and more. For example, ask your allies to write letters to HR in support of the coverage change. Give them a template and set up another meeting with them to finalize and send the letter. Go online to reach a broader community: set up a Facebook page so that people can follow the progress of the event and contact you with support and ideas. We created an online petition to the VP of HR where supporters could sign, share why they support the change in coverage and share the petition on their social media pages to get even more support. Write to your local newspapers, and reach out to the media asking if they will cover the story. Eventually the person who makes coverage decisions will be hearing from a lot of different people. In the end, you don’t want to annoy this person because you need their support, but it is important that they see the broad impacts of this coverage decision.
13. Let the wheels of the institution turn. It seems like life is one two-week wait after another. As hard as it is to wait on other people who seem to be moving at a glacial pace- you have to give the your institution time to schedule and hold meetings about this issue, plus do their daily jobs. To make it more bearable for you and them, ask for timelines and deadlines for decisions.
****All resources have been moved to a single resource page for your convenience :)