Welcome to the WBCC blog. The WBCC has been fighting against breast cancer for 23 years. Our supporters are survivors, family members, health care workers, environmental advocates and others touched by this disease. In other words, we are you.

We’ll be engaging our community moving forward with a monthly blog that will give you a sense of the breadth of interests and concerns among our volunteers. Our contributors will be staff, board members, committee members, and others with an interesting take on issues of relevance to you. Let us know if there is a topic of interest to you. We’ll find an expert to address it.

 

Medicare (Cue the Orchestra and the Singing Birds)!

By Marsha Connet

 

I was more than a year overdue for my mammogram, but I was just a few months away from Medicare and knew I could wait it out. I had been purchasing my health insurance on the Wisconsin Exchange, so had few choices and ever fewer I could afford. Don’t get me wrong — I still believe the Affordable Care Act was one of the best things that could have happened for so many who previously had to patch together care in many less reasonable ways. My main issue had been the plan I chose assured me they covered my health care provider system — my primary care doc, my hospitals, etc. The first rude awakening was when I had my first mammogram with my new policy. They covered the cost of the center itself but the radiologists were not “in network” and I had to pay the charge myself.  I never quite met my deductible, so I am paying for services on the long-term plan.

Medicare (cue the orchestra and the singing birds)! I was more than excited to enroll and was able to choose a Cadillac supplement and still pay half of what I paid on the Exchange. My first foray back into health care was to schedule my mammogram for the month my new insurance kicked in.

I had been following a number of conversations on Face Book about breast health and about 3D mammograms in particular. Then I got a call from my sister-in-law in Florida telling me she had just been diagnosed with breast cancer. She’d had the 3D mammogram and was crediting it for catching her cancer so early. As I was following her progress, I saw a retired nurse friend of mine on Face Book who was really promoting 3D mammography. She had beaten breast cancer once and now was facing a second diagnosis. She was making it her personal mission to reach out to as many women as she could to, first, get screened, and second, make it a 3D. Gayle called it her “silver lining.” If she could encourage even one woman to get a 3D mammogram and catch a diagnosis early, it would be the silver lining to her cloud of dealing with this dreaded disease again. She was going so far as linking women to no-cost programs and researching the costs. She found that in most cases where insurance wouldn’t pay for the 3D, the out of pocket was very affordable (about $35 on average).

The day for my mammogram arrived.  I was almost giddy knowing I was doing something really good and there would be little or no out of pocket expense. The center I went to accommodated my request for a 3D, and I overheard them asking women checking in after me if they wanted it. Only about half said yes.

The procedure went well, until I noticed the technologist spending more time on one area and then doing some additional pictures.  She was very professional, and I might not have noticed, except we had been chatting away during the early minutes and that had ground to a halt at the final moments. A tiny kernel of fear grabbed my heart, but I tried to ignore it. I went about my business knowing I’d hear one way or another in a few days or a week, and I was praying it would be a week. I checked in on Face Book with my sister-in-law and my friend Gayle. I told them both it was done and got a thumbs up from each.

I was settled in bed a couple nights later and looked over at the message light on my phone. Somehow I had missed a call. I pulled myself up in bed and checked the message: “Hello this is Linda from the Women’s Imaging Center. We’d like you to come back….” I immediately Face Book messaged Gayle.  I decided my sister-in-law was going through enough and didn’t want to burden her with something that might be nothing. Gayle responded immediately — it was 11:30 pm her time. She went into best friend/nurse mode: “Do you want me to come up? I can go to your appointment with you. Don’t worry, the chances of this being a benign something are about 80%,” and on and on making me feel better. I told her not to make the trip all the way from Florida and promised to keep her in the loop. I called first thing the next morning and took the first appointment I could fit into my schedule,  about a week away.

What dawned on me as I hung up from that phone call was I COULD schedule it. I now had insurance that would cover this return visit and anything else I would need. I wondered to myself if I had my old plan that covered small of amounts of only some of the care I might need, what would I have done? I now understood why people who can’t afford healthcare or those who can barely afford it are sicker and die more often. They have to give a life-saving appointment a second thought. What kind of system is it when the best health care in the world isn’t available for the people who need it?

I went to my follow-up appointment with a mix of fear and relief, knowing I could face whatever was ahead, and I had people who would be there to support me. The radiologist read the mammogram immediately while I waited and reported, to my relief, that everything was fine. I finally took a deep breath for what felt like the first time in a week.

My first text was to Gayle with the good news and the next were to my sister-in-law and my daughter. Big relief all around. Was I unhappy that the 3D picked up what at first appeared to be a problem? No, not one bit , because if it had been cancer, I would want to know right away. The one regret I have is that not all women have the peace of mind of great health coverage that I have. I’ve joined the ranks of friends talking up 3D mammograms and those pushing for a better health coverage system so no woman has to give follow-up a second thought.

Why I Volunteer for WBCC

By Katrina Schwarz

Why I Volunteer for WBCC

It was spring of 2015. I was a year out of grad school, working at my first job out of school and still looking for a sense of purpose. After looking around for different places to volunteer, I stumbled upon the Wisconsin Breast Cancer Coalition. What first jumped out at me was the variety of committees within the organization. Part of me was definitely excited at the prospect of sharing and sharpening my skill set. But volunteering for WBCC is about so much more than that. It’s about doing good and being part of something bigger within the community.

The number of people affected by the work the WBCC does is not small. Whether directly or indirectly, breast cancer affects everyone. Healthcare legislation affects everyone. Having access to information about healthcare improves lives. The WBCC works within the community in a number of areas to make this happen:

  • Healthcare education is one major area in which the WBCC is involved. It helps provide breast cancer knowledge to advocates, groups, healthcare centers, and organizations through educational programming.
  • Legislation is another key area in WBCC’s mission, and the organization empowers advocates at the state and national levels to support healthcare and breast cancer legislation.
  • The WBCC also collaborates with organizations with similar missions to make more of a difference in the community.

In addition to the variety of initiatives the WBCC is involved in, it also engages survivors through programs like the Rare Chair Affair to further create a sense of community.

In light of all the good the WBCC has done already and has the potential to do in the future, I am very proud to be able to help support its mission as a volunteer.

Survivor/Artists Prepare for Summer

 

Breast cancer survivors gathered for the Rare Chair Affair Survivor/Artist Kick-Off at the Medical College of Wisconsin May 30 to talk about the summer-long process and get to know each other a little bit. The group meeting together skewed young and brought stories of recent, shocking breast cancer diagnoses amid the pressures and busy-ness of being young, working mothers.

Several were new to the program and others were “alums”, able to share tips and thoughts about how to make the most of the opportunity.

Marie Burrows, who is two years out from her diagnosis and in remission, said when she stepped forward last year, “It was like my favorite thing to do all summer.” Jane Moore, one of two artists who will be mentoring the group this year, said: “When you ask me, why do you want to do this, I just wrote down because it makes me happy! I feel like I’m with my tribe, but we’re having fun.”

Zandra Clevert and Sherie Drees, who are both helping organize the Rare Chair Affair this year and were both Survivor/Artists last year, urged participants to take advantage of the group painting sessions every week as an opportunity to share with people who understand the breast cancer experience. It is the community-building of the shared time together that really makes the experience special.

At this point, 15 women have confirmed their participation as Rare Chair Affair Survivor/Artists, whose artistic creations are the centerpiece of the Wisconsin Breast Cancer Coalition’s Rare Chair Affair on Friday, Oct. 6. There is still space for others interested in painting with the group this summer, organizers say. Interested persons should email wbcc@wibreastcancer.org.

Participants have identified the following issues of concern related to breast cancer:

  • Better insurance coverage. “I was made to feel like I shouldn’t get things checked out because it would cost money.”
  • Insurance for pre-existing conditions
  • Focus on young women diagnosed with breast cancer and Stage IV resources. “I’ve lost a few close friends (young women) to Stage IV breast cancer in the previous year.”
  • Good health insurance coverage for all women for breast cancer prevention, treatment, follow up, that does not exclude it as a pre-existing condition or cause care to be so expensive it is unaffordable
  • Support for research; do not cut funding
  • More mammograms covered by insurance
  • Insurance coverage for genetic testing
  • More research on the connection between diet, environment, stress, lifestyle factors and breast cancer
  • Emphasis on early detection and individual risk assessment

Why We Oppose the Waivers

What to Know about the Medicaid Waiver Amendments

Public comment is currently being accepted on Governor Walker’s plans to charge state Medicaid recipients making less than $12,000 per year a monthly premium for their coverage, require them to take a Health Risk Assessment Survey as a condition of eligibility, screen them and even test them for drug use.

In what is known as a Section 1115 Demonstration Project, states may request waivers from federal Medicaid law in order to test new ways to deliver health care coverage to those who need it most. According to Medicaid.gov, the federal government looks at these requests to see if they meet these goals:

  • Expand eligibility to individuals not otherwise in Medicaid or CHIP
  • Provide services not typically covered by Medicaid
  • Use innovative service delivery systems that improve care, efficiency and reduce cost

Wisconsin is currently operating under a Section 1115 waiver and is now seeking to amend it with these new provisions.  Governor Walker has expressed his belief that by identifying drug users in the program (or seeking to use the program), he will be able to recommend them to treatment centers with the goal of making them employable and therefore not in need of the services of the state for health care coverage.  It is important to note that Medicaid is a HEALTH program, not a JOBS program.

“Medicaid was specifically designed to meet the needs of low-income individual, who have disproportionate medical needs and health challenges” according to the National Health Law Program.[1] It seems fairly clear that Governor Walker’s request is not in line with the goals of a Demonstration Project as stated above.  Medicaid law prohibits premiums on all individuals below 150% of the federal poverty level (FPL) because low income individuals cannot afford to make monthly payments no matter how small. It is reasonable to expect that people will fall off the program due to non-payment.  So the waiver will not ensure that more individuals are eligible for Medicaid by that measure.

Neither will the state’s Health Risk Assessment (HRA) provide a service not already covered by Medicaid. Wisconsin’s contract with health care providers requires them to conduct a Health Needs Assessment (HNA) screening of new enrollees. This HNA includes screenings for health risks and includes alcohol and other substance abuse. So the state’s new HRA would be duplicative, will cost taxpayers MORE to administer and, importantly, will endanger what should be confidentiality between a doctor and patient. Trust must be established or else efforts to intervene are unlikely to be effective.

HERE IS THE CONCERN OF THE WI BREAST CANCER COALITION: Multiple barriers already exist for low income women to gain access to breast screenings, diagnostics and treatment. Women making over 100% FPL were kicked out of Badgercare and referred to the ACA marketplace. The WI Well Woman Program – which provides cancer screenings for low income women up to 250% FPL – was dramatically scaled back by the state in 2015, reducing service coordinators from 1 per county (72) to 14, and reducing by half the number of providers. Finally, the state continues its efforts to close down Planned Parenthood by cutting off funding for these clinics which provided over 2600 breast screenings in Wisconsin in 2015[2]. If approved, Governor Walker’s plan will surely be another hurdle for women seeking access to breast screenings and treatment, if needed.

Please go to Wisconsin1115CLAWaiver@dhs.wisconsin.gov before May 19 to share your thoughts on this plan with the federal authorities who will be reviewing it. More information on the waiver request can be found  HERE.

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[1] “What Makes Medicaid, Medicaid: Five Reasons Why Medicaid is essential to Low Income People”, Leonardo Cuello, January 14, 2015

[2] PPWI 2015Annual Report

The Metastatic Dilemma

by Eric Buhler

2017. Technology continues to amaze us. We’re connected to the world at the push of a button. We hold endless access to information in our pockets and purses; yet here we are, in 2017, with no great answer to the metastatic breast cancer dilemma. The fact remains that no one dies from cancer in the breast. Metastasis occurs when cancerous cells travel to a vital organ, and that is what threatens life. I would like to say everyone understands this, but I can’t, because research states that 61% of people know very little about metastatic breast cancer.

Eric Buhler

Currently, an estimated 155,000 Americans, young and old, women and men, are living with metastatic breast cancer, and it accounts for approximately 40,000 deaths annually in the U.S. We as a society stress the importance of early detection and screening, but 20-30% of people initially diagnosed with early stage disease will develop metastatic breast cancer. Early detection does not guarantee a cure. Metastatic disease can occur 5, 10, or 15 years after a person’s original diagnosis. So, what are we doing about it?

Sadly, we are not doing enough. Fewer than 8% of researchers even mention the word metastasis in their grant applications. MBC (metastatic breast cancer) focused research made up only 7% of the $15 billion invested in breast cancer research from 2000 to 2013 by the major governmental and nonprofit funders from North America and the United Kingdom (MBC Alliance Landscape Report on Metastatic Breast Cancer 10/13/14).

As an oncology nurse, I see metastatic disease rear its painful hardships too frequently. It continues to make me ask the question, why aren’t we doing more? Are we afraid to take on the bigger challenge of what actually kills us? Are we afraid that our research may fail at times? I don’t accept the notion of it being “too hard” or “not worth the time.” We cannot continue to let our loved ones die due to the underwhelming principle of this disease process being “too hard.”

We are leaving the metastatic community behind. It’s as simple as that. Metastatic breast cancer claims 110 lives a day, and here we sit, still painting breast cancer as something beautiful. So wear your pink shirts, buy the endless exploited merchandise on the market during Breast Cancer Awareness month, but I know where I’m going to put my energy. I know who I am fighting for, and so does the WBCC. The 110 a day.

Living without Reconstruction

By Laura Callen, WBCC Board Director

Living without reconstruction; it is an option.

When I was laying on the MRI machine listening to the loud clicking noise, in my mind I knew it — cancer again.  I had just turned 39.  I had DCIS [ductal carcinoma in situ] 11 years earlier, and my younger sister, Lesa, had died at age 37 from triple negative breast cancer only nine months earlier.  It was right there in that MRI machine that I decided to have a double mastectomy.  Clearly, my breasts had an agenda of their own, one I could not control. 

I clearly remember my doctor telling me I would need to have a biopsy after the MRI revealed a suspicious area.  During the biopsy, my nurse practitioner came to check on me, and as she was leaving, I yelled to her: “I know this is cancer.  I want a double mastectomy.”  There was no discussion.

Of course, the biopsy came back positive.  I was scheduled for surgery six weeks later (talk about a LONG six weeks).  I decided to visit a plastic surgeon to discuss my options for possible reconstruction.  When I found out that because of previous radiation I would not be eligible for implants, I began to think, “Do I really need breasts?”  The only other option I had was for a tram flat reconstruction.  The thought of a flat tummy was appealing, but I needed to look further into this option.  When I found out exactly what went into this procedure, and the number of hours I would be on an operating table, and the time needed to recover, I had second thoughts. I have two small children.

I had many conversations with my husband about what it would be like to be with a woman with no breasts.  He was more concerned with me still being here.  He had no problem.  That was that.  I opted for no reconstruction.  Luckily, I was connected to some very awesome mentors through ABCD (After Breast Cancer Diagnosis), one who had opted for no reconstruction and one with small children (with reconstruction) who helped me solidify my decision.

After my surgery and the healing began, I will admit there were days that I questioned my choice.  What wasn’t shared with me or told to me was that I would need to mourn the loss of my breasts, mourn the loss of who I was as a woman before cancer, and now I needed to try to accept this breast-less woman.  At first, I couldn’t wait to get my prosthetics.  I remember standing in the “shop” looking at bras and feeling hopeful because they looked “normal.”  When I wore my breasts for the first time, I cried.  It brought me back to a time before cancer, but somehow it just didn’t feel the same.  The prosthetics covered by my insurance were heavy and very uncomfortable to wear.  I spent the following year wearing them to work but going “flat” on the weekends.  And wouldn’t you know it, flat began to feel like the new normal, the new and improved me.

Soon I began to start to accept and feel comfortable in my new body.  I won’t lie and tell you that I don’t have days where I question my decision, days when nothing in my closet will  work because clothes are built for women with boobs. I cried a bit when I realized my favorite strapless dresses wouldn’t work for me any longer.  And those days where I feel people staring at me (sometimes I wonder if it is just me or are they really looking?), I hold my head high, because I know how lucky I am to have survived.  It is worth a few stares now and then.  I have since completely stopped wearing my prosthetics.  I am now flat and fabulous everyday.

If you are a young woman wondering if you want to have reconstruction please remember you have the option to not reconstruct.  It just might change your life.

 

Protecting ACA Is a Key 2017 Priority

Hayley Young, Capitol Advocate

Hello,

My name is Hayley Young and I am the Capitol Advocate for the Wisconsin Breast Cancer Coalition (WBCC). In this blog, I’ll be doing regular updates about policies that impact breast cancer community issues that we’ve selected as our national and state priorities.

One of our most pressing policy issues is ensuring access to health care. That’s why the Protection of the Affordable Care Act is a key issue in our 2017 Policy Priorities.

Lawmakers need to remember that access to preventative healthcare isn’t just about cost, it’s a life and death decision. For people who are facing cancer, are cancer survivors, or one of the other millions of Americans who were insured for the first time, the Affordable Care Act gave access to life saving prevention and treatment.

Protection of the ACA isn’t a partisan issue, it’s a commonsense issue. Nearly 8 in 10 Americans oppose repealing the Affordable Care Act without a viable replacement. Those average Americans are joined by hospitals, healthcare providers, and industry professionals who know repeal could be disastrous.

Before the ACA, cancer patients and survivors were left in the lurch, because insurers were allowed to reject people with pre-existing health conditions. A pre-existing condition often meant choosing between exorbitant premiums or no coverage at all. If the ACA is repealed, nearly 1 in 4 adults could be denied access to healthcare coverage for this reason.

Another important provision under the ACA is allowing young people up to age 26 to be covered by their parents’ insurance. In Wisconsin, 40,000 young people were able to be covered in this way. An estimated 224,000 people in the state who are covered directly by the Healthcare.gov Marketplace will have their health care disrupted with a repeal.

For people who would be impacted by the repeal of the Affordable Care Act, now is this time to stand up and speak out in support. Go to www.wibreastcancer.org/legislation/find-my-representative/ to find your federal representatives, and contact that to express your support of the Affordable Care Act.

I’ve only been with WBCC since June, and have so enjoyed getting to work for an organization that focuses both on education and meaningful policy change. Our focus on collaborative change means we are connected with partners throughout Wisconsin working on local, state and federal issues. As we expand our advocacy and education efforts throughout Wisconsin, we want your help. Learn more about our volunteer efforts here.

Until next time,

Hayley