In honor of Mother’s Day, Vermont Ambassador, Angela Smith, reflects on her journey as a high-risk woman and mother.

My son is the reason that I decided to test for the BRCA mutation.

I knew that I was at high risk for breast cancer, because my family history was riddled with the disease. I grew up certain that I would get cancer, because that’s what happened to women in my family. When my mother told me that she had tested positive for the BRCA1 mutation, she also sent me a packet of information about the mutation and contact information for my local genetics center. But I dismissed it, thinking that it wouldn’t make a difference.

When I met with a genetic counselor about it, however, she said something that struck a chord. “If you have the mutation,” she said, “there’s a 50% chance that your son has it also.” There was my reason.

It seemed unfair of me to withhold this knowledge from my son, who was only 7 at the time. He was too young to understand what it meant, and what the implications are for him. But as his mother, I held responsibility for giving him the best possible chance at a healthy life. If I tested negative for the mutation, then at least I would know that my son didn’t have it.  I had the test, however, and it came back positive for the BRCA1 mutation.

Right from the start, I was very open about the mutation. I talked about it with my partner, family and friends. I was involved with Bright Pink. I was looking to connect with as many people as possible. So it was natural that my son heard about it. He saw my involvement at Bright Pink events and was curious about them. He is a curious child, and asked questions. It never occurred to me to not answer them honestly or openly.  As with any difficult topics, the conversations were always age-appropriate and measured. I explained to him that my genes work differently than they should. I explained that this meant that there was a higher chance for me to get cancer, but stressed the fact that I am healthy right now and doing what I can to remain healthy.

Several years later, he asked me how I got this mutation, and I explained that I inherited it from my mother. A few minutes later, after thinking quietly, he asked, “Does that mean I have it too?” My heart wrenched, but I was proud of him for connecting the dots and realizing that this might be something that could affect him. I told him that I don’t know if he has the mutation, but that there is a chance that he does. And I explained that there was plenty of time for him to worry about it when he was older, that he was healthy now. To which he said, “OK. Can I go skateboarding?”

It wasn’t so much that I had a plan for how to explain this to my son. His father and I have always been open and honest with him, and this was something that will potentially affect him as he grows older.  I knew that I wanted him to be as prepared as possible, and that means having as much information as possible.  When he gets to an age where he can decide to test for the mutation, I want him to feel empowered and supported. I want him to understand that breast cancer isn’t just a “woman’s disease.” I want to remove the taboos around male breast cancer so that when he’s old enough for this to be a real concern for him, he can talk about it openly and get the care that he needs without any fear or shame.

Several weeks ago, we had an event for Bright Pink Vermont, and in the weeks leading up to the event my son saw me making arrangements for logistics and volunteers. When I told him that our volunteers would be wearing Bright Pink t-shirts, he asked if he could have one too. I was a little surprised at first, but on the night of the event, I could not have been more proud. My 12-year old son unabashedly wore his Bright Pink t-shirt, and walked around an auditorium full of people selling raffle tickets and handing out Little Bright Books.

As mother’s day approaches, I can think of a million things about my son that bring a smile to my face. As any parent can attest, having a child is an amazing experience. And watching that child grow into a confident, self-assured person is one of the most heart-warming things you can see. For me, part of that is knowing that I’m doing what I can to give my son the tools to live a happy, healthy, and brilliant life.

Since Congress passed the Patient Protection and Affordable Care Act (ACA) in 2010, there has been a great deal of debate in the news about how healthcare reform will affect our society. The bill is over 1,000 pages long, so we’ve put together this guide to help you understand your rights and how the law will allow you to become more proactive with your breast and ovarian health.

How Does the ACA Benefit You As a Consumer?

Certain Preventive Services are Covered Free of Cost to Patients:

• The ACA mandates that health insurance plans cover certain preventative services, including well-woman visits and mammograms, free of charge without having to pay a copay or deductible. Click here for a list of all covered preventative services.  However, The law only applies to preventative services, not diagnostic services and plans started by an employer (grandfathered plan) prior to 2010 are exempt from this provision.
• HIGH-RISK WOMEN: Many of these services have age limits, so young high risk women seeking access to screenings at a younger age won’t get free coverage. Insurance companies may still cover these services, but a copay or deductible may apply. Be sure to check the law in your state, as some states require insurance companies to cover mammograms for high-risk women under 40.  For more information about your state’s specific laws, contact the CLRC.

Health Insurance Companies Can No Longer Rescind an Insurance Policy:

• Insurance companies are banned from retroactively canceling insurance policies based on mistakes made on an application. Companies can only rescind policies if they discover fraud, intentional misrepresentation of health status or if an individual fails to pay premiums.

There Can No Longer Be Lifetime Limits and There Are Restrictions On Annual Limits:

• The ACA bans lifetime dollar limits on health insurance plans. Beginning in 2014 there will be no annual limits.
• Some plans can apply for a waiver on annual limit rules until 2014. If your plan has a waiver and you reach an annual limit, you may need to find another insurance option for the remainder of the year. Beginning on January 1, 2014, you can shop for insurance through a health insurance exchange.

Consumers Have Greater Insurance Appeals Rights at the Federal Level:

• If your insurance company denies coverage for a procedure, the ACA gives you greater appeal rights. Under the ACA, insurance companies must notify you of the reason for the denial, your right to file both an internal and external appeal, and must make a decision within a specific timeframe set by the government. Click here for a step by step guide to insurance appeals.
• These rules only apply to plans that were established on or after March 23, 2010. Check your state law to see if they have appeal rights that would apply to your health insurance company.

Beginning January 1, 2014, Medicaid Is Expanded to Include All Low-Income Adults:

• Beginning in 2014, Medicaid will be expanded to all non-elderly Americans with incomes below 133% of poverty and will ensure low-income Americans can enroll in the program regardless of whether they have dependent children or a disability.
• The Supreme Court ruled that states can opt out from Medicaid expansion, so individuals living in these states will only qualify for Medicaid if they meet a program category requirement. If your state is not expanding Medicaid, speak to local advocates in your area to share your story and participate in the call for Medicaid expansion.

How does the ACA Benefit You as a Young Woman?

Beginning January 1, 2014, Health Insurers Will No Longer Be Able to Charge Women More Than Men:

• Beginning January 1, 2014, health insurance companies will only be able to consider four things when setting premium rates: age, geographic location, number of people insured, and tobacco use.

Young Adults Can Access Health Insurance Up To Age 26:

• Children can stay on their parents’ insurance until age 26 regardless of their enrollment in school, whether they are dependent of their parents for IRS purposes, or if they married or have children. Young adults cannot stay on their parent’s plan if they have access to their own group health plan.

What Should I Keep In Mind as A Cancer Survivor?

No More Pre-existing Condition Insurance Denials Beginning in 2014:

• Starting in 2014, health insurance companies will no longer be able to look at a person’s medical status when determining whether to insure a person and how much to charge.  Thus, individuals with pre-existing conditions, such as cancer, will be able to access health insurance on the individual market. For more information on what this means for you and for information about specific insurance plans, contact the Cancer Legal Resource Center.

For more information about healthcare reform, visit the federal government’s The Portal, which provides comprehensive information about healthcare reform.