Being Bright Pink

To The Mother’s We Have Lost, Those Fighting, And Those Left Behind

When I was a kid I would always try to think up fun ways to make my mom feel special on Mother’s Day. Usually that would involve a poorly executed (burnt), but well-intentioned (pretty presentation), attempt at breakfast in bed. Now my entire perspective on Mother’s day has changed.

Now I find it ironic that most Mother’s Day celebrations are synonymous with brunch, breakfast in bed, and pampering mom. Since on the last Mother’s Day I had with my mother; no food was had since she could no longer eat solids, bed was a necessity not a choice, and taking care of her was a need not a luxury. I will never look at Mother’s Day the same. It’s not that I dwell on these thoughts and hate the holiday but the things I celebrate have changed.

Now I view Mother’s Day as a time to remember what an amazing woman my mother was. I think of her infectious laugh, love for adventure, sharp tongue, ability to never let you off easy, and amazing warmth.  I think about the way she lived her life and the people she impacted. I use those thoughts as fuel to motivate me and keep me focused on my goals. I use Mother’s Day as a reminder to speak out and teach others that knowledge is power and being proactive is the best defense. I use Mother’s Day as a reminder to allow myself to be vulnerable and share my family’s story to hopefully bring awareness.

In March 2008 my mother went to her doctor complaining of back pain and left knowing she had two large tumors on her ovaries. Ovarian cancer ran in the family and my mother always told her doctors to watch for it, but they still couldn’t find it until she was already at stage four.

As I struggled to cope with the terrible news of her cancer and remain strong for her, I couldn’t help but also think “this could be my future”. As a 22 year old just graduating college this is an overwhelming amount of information. Shortly after figuring out my mom’s plan for treatment, my parents and I figured out my plans for early detection. The two of us, determined to ensure her story would not become mine, started on a journey together. She was waging a war against this dreadful disease and I was on a quest for information and support. What I found became that and so much more.

That’s when I found Bright Pink – and found an instant connection to the organization from my first interaction. Until then, all of the cancer organizations I knew supported women like my mother – women who had cancer. Bright Pink was different – it was there for women like me who were high risk. Bright Pink gave me a forum to discuss worries for my health and find support for what I was going through with my mother. Bright Pink knew that I needed emotional support, information and a plan of action.

The first program I connected with made a huge impact on my life, Bright Pink experiential outreach events. These events allowed me to connect with other young women who understood my situation.  They, too, could relate to the pressure and anxiety that I carried with me each and every day as one of my mom’s main caretakers.  They were going through the same thing. These groups gave me a forum to discuss what I was going through in an atmosphere that was warm, welcoming, upbeat and fun. Whether it was a yoga class, manicures or a cancer-fighting food workshop, I always left feeling inspired with new tools and resources to cope with my mom’s ever worsening situation and to give me the confidence that I was doing all I could to be proactive with my own health.

In addition to Bright Pink being emotionally supportive, it was also arming me with the life-saving information I needed to ensure my mother’s cancer battle would not one day become my own. That it’s really the unknown that makes being high-risk so scary.  They helped guide me as I developed a prevention and early detection strategy that was right for me, including finding the right doctor and starting to make changes in my life now to affect my future. Through it all was the consistent positive message that gave me a whole new outlook on what it meant to be a young women at high-risk for cancer.

On June 29th, 2011 I left my parents home after spending the day with my Mom. She said she would “see me tomorrow” as her and my father sat down for dinner. Hours later my father texted me saying “Emergency, we are headed to the hospital.” I rushed over hoping for the best. However, the reality was I was only able to tell her I lover her even though she couldn’t respond, watch her smile, and be with my parents.  That night she passed away.

Now I will not sit idly by and watch others receive a late cancer diagnosis that could be avoided with the proper tools. The best way to fight any type of cancer is early detection, which is why breast and ovarian cancer awareness is so important. I watched my mother deal with symptoms of ovarian cancer for months before being diagnosed.  She wanted to tell her story so others wouldn’t find themselves in a similar situation. Now she’s my inspiration to get the word out about awareness.

Know the symptoms, talk to your doctors, and know your body.

Bright Pink gives me a voice. They inspire me every day to create a destiny for myself that will undoubtedly be different than my mom’s. Being high risk, a caretaker for someone with cancer, and losing a loved one can leave you feeling lost and without hope, but I promise you there is life beyond these labels. Because of Bright Pink I have the love, support, knowledge, tools and positive outlook to lead a healthy and proactive life.

So now that you have celebrated the mothers in your world take a moment to celebrate the mothers we have lost, the one’s fighting, and those left behind to tell their stories. It is this generation of young women and organizations like Bright Pink who will change the future of these diseases so we can be there when our daughters want to make us awful burnt scrambled eggs in bed.

Love everyone, seek knowledge, share stories, ask questions. It’s how we grow.

A Toast To Our Moms This Mother’s Day

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.

 

How does Healthcare Reform Affect Me?

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.

Genetic Counseling & Testing Among Preventive Services Covered Under the Affordable Care Act

Cancer Groups Praise Coverage of Genetic Counseling and Testing Under Affordable Care Act, Urge Coverage of Other Vital Services

 

Washington, DC—The federal government recently released regulations that clarify which preventive services will be covered under the Affordable Care Act without cost sharing for patients enrolled in private insurance plans. Preventive services are provided without cost sharing to people enrolled in private plans that were established after August 1, 2012. Insurance plans under the Affordable Care Act cannot apply a co-pay or deductible to services outlined in the act.

Among the services included in these regulations are genetic counseling and testing for inherited breast and ovarian cancer risk in women with a family history of cancer. Breast and ovarian cancers have been linked to mutations in the BRCA1 and BRCA2 genes.

The Ovarian Cancer National Alliance, FORCE, Bright Pink and CCARE Lynch Syndrome applaud the government’s attention to women’s health services in general and preventive services in particular. We are happy that genetic counseling and genetic testing will be covered without cost-sharing, as these are important services for women who may have an increased risk of ovarian and breast cancers. The new regulations are a step in the right direction, but they have only taken us halfway there. We are concerned that the current regulations do not include the following:

  • genetic counseling or testing in people with a family history indicative of Lynch Syndrome (which is associated with colon, uterine, and ovarian cancer) or other hereditary cancer syndromes;
  • genetic counseling and testing for women who have already been diagnosed with cancer;
  • risk-management services such as increased surveillance and prophylactic surgery which has been proven to reduce the risk for developing cancer and the risk of dying in high-risk women; and
  • genetic counseling and testing in men.

As organizations representing thousands of women and families who have or are at risk of developing hereditary cancer, we will continue to work with appropriate government agencies to ensure coverage of evidence-based services that reduce people’s risk for cancer.

The preventive services covered under the Affordable Care Act are based on recommendations from the United States Preventive Services Task Force and include women with the following risk factors:

  • Ashkenazi Jewish women with one first degree relative or two second degree relatives on the same side of the family with breast or ovarian cancer
  • Non-Ashkenazi Jewish women who have:
    • two first-degree relatives who had breast cancer; at least one of these two were diagnosed before age 50;
    • three or more first- or second-degree relatives with breast cancer regardless of age at diagnosis;
    • a combination of both breast and ovarian cancer among first- and second-degree relatives;
    • a first-degree relative with bilateral breast cancer;
    • a combination of two or more first- or second- degree relatives with ovarian cancer, regardless of age at diagnosis;
    • a first- or second- degree relative with both breast and ovarian cancer at any age; or
    • a history of breast cancer in a male relative

These guidelines are based on USPSTF’s Genetic Risk Assessment and BRCA Mutation Testing for Breast and Ovarian Cancer Susceptibility recommendations released in 2005. The USPSTF is currently reviewing these guidelines. Revisions in the guidelines could impact preventive services covered by the Affordable Care Act and services available to Medicare beneficiaries

Women with breast cancer diagnosed at age 50 or younger or ovarian cancer at any age meet expert guidelines for genetic counseling but this service is not specifically covered under the Affordable Care Act.

People who are concerned that the cancer in their family could be hereditary should consult with a qualified genetics professional prior to proceeding with genetic testing for cancer risk.

 

About the Alliance: 

The Ovarian Cancer National Alliance is the foremost advocate for women with ovarian cancer in the United States. To advance the interests of women with ovarian cancer, the organization advocates at a national level for increases in research funding for the development of an early detection test, improved health care practices, and life-saving treatment protocols. The Ovarian Cancer National Alliance educates health care professionals and raises public awareness of the risks and symptoms of ovarian cancer. The Ovarian Cancer National Alliance is a 501 (c) (3) organization established in 1997. For more information, or to schedule an interview, please contact Amanda Davis at adavis@ovariancancer.org or (202)331-1332.

 

About FORCE: No one should have to face hereditary breast and ovarian cancer alone. For more than 13 years, FORCE has been the voice of the hereditary breast and ovarian cancer community. FORCE provides support, education and awareness to help those facing hereditary breast and ovarian cancer know their healthcare options and make informed decisions. The organization is the de facto leader in guiding critical research and policy issues that impact the hereditary breast cancer and ovarian cancer community. For more information about FORCE and hereditary breast and ovarian cancer, please visit www.facingourrisk.org.

 

About Bright Pink: Bright Pink is a national non-profit organization focusing on the prevention and early detection of breast and ovarian cancer in young women while providing support for high-risk individuals. Our innovative education and support initiatives inform young women about their lifetime breast/ovarian cancer risk, help them develop a prevention/early detection strategy based upon risk and offer support and a sense of community to women who are at high-risk for these diseases. Visit BrightPink.org for information about our educational and support programs and resources for young high-risk women.

 

About CCARE Lynch Syndrome: Leading the fight against Lynch syndrome through education, advocacy and research. Lynch syndrome is the second most common genetic cause of ovarian cancer, and the most common genetic cause of uterine and colon cancers. Our national non-profit is dedicated to saving lives by increasing Lynch syndrome awareness among health care professionals and the general public.