YSC Rocked 2012!

 

Wow! What a year! So much happened, yet I feel like the year went by in a flash.

There are exciting things coming to YSC in 2013. Before we dive into where we are going, we should celebrate where we have been. 

 

Here is my 2012 Recap:

 

1 YSC, Face 2 Face

In the summer of 2012, I announced the launch of YSC’s “1 YSC” campaign to invite all young women with breast cancer to stand together as one united community. I spoke at the Affiliate Summit in July and began an open four-month discussion with our current volunteer leaders about how we would do this together. As a result, together as 1 YSC, we developed solutions to create a new community of engaged volunteers and survivors that we’ll be rolling out in 2013. Check out the video that kicked off this initiative.

 

Post-Treatment Navigator Released

BIG NEWS!!!! This year we released What’s Next? A Young Woman’s Post-Treatment Navigator, a guidebook based on a 2010 survey to 300 women in the YSC community. This insightful book, the third installment in YSC’s navigator series, explores a wide range of topics including: potential long-term side effects like chemo brain, early menopause, lymphedema and weight management; understanding emotions and relationships changes; living a healthy lifestyle, and more. This is a must read! Click here to download the PDF or order a free print copy.

 

East Coast Tour de Pink Sells Out!

Two hundred three-day riders and more than 50 one-day cyclists signed up for the 2012 YSC East Coast Tour de Pink. I rode all 200 miles for the first time and it was INCREDIBLE!!! Our Tour de Pink bike rides this year raised over $1.2 million and had 1,400 participants overall, including 200 survivors. Check out pictures here. I took my body back and kicked cancer’s butt!!! If you have not seen the amazing videos from this years’ ride, watch them. If you haven’t yet experienced one of our Tour de Pink events, I’m confident you’ll want to join us in 2013 after viewing these videos.

 

YSC’s YouTube Channel is Launched

YSC is now on YouYube. Have you subscribed to our channel? It rocks! Check out the new “WHY I RIDE” video series where various people talk about what inspires them to climb on a bike and ride 200 miles in Tour de Pink.

 

31 Faces, 31 Days BCAM Campaign

Breast cancer isn’t pretty and it’s not pink … That’s what we told the world this October! YSC highlighted 31 young survivors’ stories that represented the various challenges young women with breast cancer face and it was a huge success! Have you read these remarkable women’s stories? They are powerful and inspiring!

 

4th Annual Congressional Women’s Softball Game

I was honored to throw out the first pitch at the 4th annual bipartisan Congressional Women’s softball game in D.C., where the women of Congress play the women from the Washington Press Corps to raise awareness that young women can and do get breast cancer. The Congressional team lost this year, but I can’t wait to see what happens in 2013! Check out Rep. Debbie Wasserman Shultz and Rep. Jo Ann Emerson making an announcement about the game on the House floor.

 

NYC & Kansas City Host the Largest In Living Pink Events, in YSC History

With more than 600 guests, the national New York In Living Pink gala raised over $250,000, including a text donation campaign that raised $10,000 in less than three minutes. Honorees included YSC founding member, Tour de Pink co-founder and board president Lisa J. Frank, Dunnan Edell from CCA Industries, and Genomic Health. The Kansas City event hosted more than 400 attendees, raised $91,0000 and honored YSC survivor Brandi Palmer and John Michael Quinn, M.D. We have two awesome videos that were taken at this year’s events!

 

A New Partnership with Keep A Breast

YSC recently created a formal partnership with the Keep A Breast Foundation (KAB), based in Southern California, for a Treasured Chest program. This program is all about respecting the beauty of a woman’s body and I am grateful to partner with such an outstanding organization on this very cool initiative … check out Keep A Breast founder Shaney Jo and I discussing it here.

 

YSC’s New Blog

We launched YSC’s first-ever blog in May and it has been an extraordinary success! I’ve been chronicling my experiences training for my first Tour de Pink rides, leading YSC, navigating my “new normal” as a young breast cancer survivor, as well as providing general YSC updates and news. We’ve also had phenomenal guest bloggers, ranging from YSC staff and survivors to advocates, legal experts and medical providers. Thank you to everyone for helping the blog become part of YSC’s culture!

 

New Partnerships!

This was an exceptional year for YSC joining forces with noteworthy partners such as Oakley, Harley-Davidson, Emergen-C, Ford Warriors in Pink and the Athleta Iron Girl event series. I’m sure most of you saw the national magazine ads that Oakley secured to promote YSC … they were sensational! I’m thrilled that sales from Emergen-C Pink (pink lemonade flavor) will help provide support services for young women with breast cancer along with Harley-Davidson’s MotorClothes® Pink Label Collection. We also partnered with the Athleta Iron Girl event series and Ford Warriors in Pink this year – which was wonderful! I can’t wait to see what happens in 2013!

 

YSC’s Program Team Wins Best Abstract at BCY1

In the fall, YSC presented four posters at the International Conference for Young Women with Breast Cancer (BCY1) in Dublin, Ireland. Not only was it terrific that YSC was able to attend and collaborate with others around the world who are decided to the same mission, one of our submissions, entitled “Young and Metastastic: Addressing the Unique Needs of Advanced Breast Cancer in Young Women,” was selected as a best abstract and presented orally by Stacy Lewis, YSC’s chief program officer and deputy chief executive, to an international community of advocates, researchers and medical providers. Kudos to Stacy and her team!

 

A Petition Signature Drive to End Breast Cancer

YSC’s mission is to support young women who have been diagnosed with breast cancer, but we also want to do everything in our power to help end this disease once and for all. To show that we are serious about that commitment, YSC partnered with the National Breast Cancer Coalition (NBCC) to help obtain signatures for its petition to end breast cancer by 2020. I am proud to say the YSC community collected over 6,300 signatures in two months to add to NBCC’s petition to the President. Thank you to everyone who signed and/or helped obtain signatures to represent young women affected by breast cancer in this effort.

 

Three New Departments are Created!

New staff, new responsibilities and a new level of commitment happened in 2012. This year, YSC reorganized itself and created three new departments: Community Engagement, Technology and Marketing/Communications (Marcom). The new positions, departments and responsibilities of the talented staff will ensure that YSC is able to fulfill its mission and reach even more young women with breast cancer than ever before!

 

I attended my first C4YW!

Did you know that the C4YW conference we co-host is the largest conference for young women with breast cancer in the world?! No, I am not kidding! This year was my first time attending and as a survivor, I was blown away. To be around almost 1,000 young women just like me is life changing. I can’t wait until February 2013 – the conference will be on the West Coast for the first time. Have you registered yet?

 

Wow … 2012 has been a magnificent year! Each and every one of you played a part in these achievements – I thank you for that.

I am enthusiastic about what the future holds for YSC – but most important, I’m grateful YSC is here to support every young woman affected by breast cancer so she knows she’s not alone. That’s something to toast to!

 

Happy New Year!

 

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Full of Cheer

Isn’t this supposed to be the time of year that’s “full of cheer”? I don’t know about you, but these days I feel like night time comes right after lunch … and then there’s all the Christmas stuff. It’s sort of like “pink” in October … it’s everywhere and you can’t get away from it.

For me, Christmas has become a reminder of the way my life didn’t turn out because of breast cancer. Don’t get me wrong, I know there are many women out there dealing with situations far worse than my own and I’m not complaining. But when I see that darling little girl eagerly waiting to sit on Santa Claus’ lap, it feels like a punch in my stomach … it’s a reminder of the future I envisioned for myself  and the family I thought I’d have by now. Even I, the CEO of YSC, feel scared as I navigate my “new normal” as a young breast cancer survivor, especially this time of year.

But, around the corner is a new year … and that means C4YW!

C4YW is the largest gathering of young women diagnosed with breast cancer in the world … and for the first time ever, it will be on the West Coast in 2013 (February 22-24)!

For me, C4YW is a reset button … It’s always at the beginning of the year and young women with breast cancer from around the world come together to reaffirm their determination of survival, remind themselves they are not alone and learn about the latest advances in research and medicine that occurred since the last C4YW.

- If you have attended before, you know what I mean … and maybe this is the year for you to come back.

- If you are newly diagnosed, this event will change your life – you will never look at your survivorship the same way.

- If you’ve thought about going for a few years, but never actually did … now is the time!

- If you care for or support a young woman affected by breast cancer, C4YW has workshops just for you!

If you want to attend, but feel reluctant because you don’t know a soul – many attendees come to C4YW by themselves and leave with lifelong friends. Here’s an example: Mikala, diagnosed at 25, attended her first C4YW conference last year and has since become close friends with five other survivors in their 20s that she met there. Other women you’ll meet at C4YW are Lori, who supported herself by teaching belly dancing following her diagnosis and now conducts a belly dancing class at C4YW to help other survivors feel sexy. Nicole is YSC’s West Coast Regional Field Manager who lives in Seattle. She can’t wait to welcome you to town and introduce you to the other women who will be at C4YW!

For each of you looking forward to the holidays, I wish you and those you love an amazing celebration!

But for those of you who, like me, are struggling with the holidays and can’t wait for them to be over, I wish you peace and comfort. Maybe now is the time to sign up for C4YW and plan a fun getaway for early 2013 … the thought that I’ll see many of you the last weekend in February brings a smile to my face and makes me feel “full of cheer”!

P.S. There’s still time to apply for travel grants!!!

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Categories: YSC SYNC - Survivors

Treatment’s Over: What’s Next?

Breast cancer presents a deep disruption to the normal life course of young women because, even once treatment is over, they now face many new issues.  They are at the threshold of establishing their careers.  They may naturally be considering life partners and starting a family. They may face not being able to have children.  They ponder when to tell a potential partner that they are breast cancer survivors.

At Young Survival Coalition (YSC), we receive questions from women at all stages of their breast cancer journey, and what to expect from life after treatment is one of the most common topics that comes up. What side effects will linger? How will I feel emotionally? What does this mean for my sexuality and self-image?

A young woman may get many questions answered at follow-up medical visits, but as those appointments become less frequent, she may feel more anxious about what to look for and expect on her own. YSC continually strives to provide information to help support and inform young women in this phase of post-treatment and is proud to announce the release of our newest resource: What’s Next? A Young Woman’s Post-Treatment Navigator.

The creation of this guidebook was driven by a survey YSC administered in 2010. We were able to obtain feedback from almost 300 young women who’d completed treatment and many common themes emerged. As a result, What’s Next? explores a wide range of topics, including: potential long-term side effects like fatigue, chemo brain, early menopause, lymphedema and weight management; understanding emotions, self-image, fear of recurrence and relationship changes; living a healthy lifestyle; financial and career planning; and interactive worksheets for creating a treatment summary and survivorship care plan.

YSC is also excited to offer, for the first time, an e-version of the guidebook, in addition to print copies. To learn more about ordering or downloading What’s Next?, visit:

http://www.youngsurvival.org/programs/learn/educational-resources/post-treatment-navigator

Life after treatment may make a woman feel relieved, anxious, or both, but either way it is a time of change. YSC encourages our constituents to continue asking questions, seeking out support, and accessing available resources through programs like ResourceLink and SurvivorLink. We hope that What’s Next? will be a helpful tool in making that transition easier.

What’s Next? A Young Woman’s Post-Treatment Navigator is YSC’s most recent installment in the Navigator Series. The series aims to provide information for young women at all phases of breast cancer and currently includes the Newly Diagnosed Resource Kit and Treatment Navigator, as well as the Metastatic Navigator. A resource for long-term survivors is coming in 2013.


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Categories: Guest Bloggers

YSC Attends BCY1 Breast Cancer in Young Women Conference

Stacy Lewis, Anna Cluxton and me at the BCY1 Conference in Dublin.

Along with Chief Program Officer and Deputy Chief Executive Stacy Lewis, Ex Officio Board President Anna Cluxton, Medical Advisory Board members Dr. Ann Partridge and Dr. Judy Garber, I attended the BCY1 Breast Cancer in Young Women Conference November 8-10, 2012 in Dublin, Ireland. This three-day conference directed to medical practitioners and researchers focused solely on issues pertinent to young women (40 and under) diagnosed with breast cancer. Organized by the European School of Oncology (ESO), approximately 300 medical professionals and patient advocates from over 47 countries attended. YSC also presented four posters at this event which summarized our survey results and work on the Long-Term Survivor Guide, Post-Treatment Navigator, Metastatic Resource Kit, and Healthcare Provider Educational Program. One of our submissions, titled “Young and Metastatic: Addressing the Unique Needs of Advanced Breast Cancer in Young Women,” was selected as a best abstract and presented orally to the entire conference by Stacy Lewis.

 The conference debated whether the biology of breast cancer in young women is unique and whether more aggressive treatments should be ordered solely because a woman is “young.” While all speakers acknowledged that young women are more likely to be diagnosed with aggressive forms of breast cancer and have a worse prognosis than their older counterparts, it is not clear why this is occurring. Some speakers believed that the tumor itself is different in younger women, while others believe that the tumors are the same, but it is the surrounding microenvironment of the young woman which is different:  a “seed” vs. “soil” dispute. We heard presentations and updates on hereditary breast cancer, emerging technologies, surgery/radiotherapy/chemotherapy, use of bisphosphonates in the adjuvant setting, and metastatic disease. Quality of life issues including fertility, early menopause symptoms, relationship issues and pregnancy were also examined.

 A common theme that surfaced repeatedly during this conference: we just don’t know enough about this population of young patients and the best ways to treat them. In the young metastatic population in particular, the scarcity of data and the reluctance of trial sponsors to include younger women in their studies was noted.

 While many examples of research needed in this population were shared throughout the conference, one quandary in particular caught my attention because it is a decision that almost all young women diagnosed with breast cancer must confront: lumpectomy + radiation vs. mastectomy. Research shared at BCY1 said that with lumpectomy and radiation, younger women have local recurrence rates 9.2% higher than older women. Based on this research, mastectomy is commonly recommended for younger patients. However, the speaker was not aware of any research that looked at the recurrence rate with mastectomy in younger vs. older women and compared that recurrence rate to lumpectomy and radiation. It may be that local recurrence rates are higher in young women, no matter which surgery is chosen. It is simply not clear. In addition, although new radiation technologies should be safer, it will take time to determine whether this is true, especially for young women who will have a longer lifespan during which long-term side effects may arise.

Two aspects of this conference reassured me. First, it was encouraging to attend a high-level scientific conference where the focus was solely on young women and where quality of life issues were deemed worthy of scientific discussion. Second, it was wonderful to hear the praise from advocates and the medical community about the value of YSC and the good work we do.

BCY1 also reaffirmed for me the value and need for our upcoming YSC Research Think Tank. In 2001, YSC organized the first medical research symposium focused on young women and breast cancer.  The resulting white paper showed where gaps in knowledge existed.  But, these gaps persist today. A large amount of research is still desperately needed in our population of young women diagnosed with breast cancer. We simply must learn more so that our constituents have the information they need to make their best, informed choices. For our Think Tank, we have assembled teams of medical professionals and skilled advocates to focus on six core issues pertinent to our population:  risk factors unique to young women; pregnancy-associated breast cancer; treatment; metastases; fertility; and quality of life/survivorship. These workgroups are currently assessing what we do and do not know in these six target areas. At our in-person Think Tank meeting in February 2013, these workgroups will meet in person to debate and strategize. The outcome of this meeting will be a list of high priority research questions that will be published and presented to the research community, with the goal of improving the quality and quantity of life for young women diagnosed with breast cancer.

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Categories: Guest Bloggers

Screening Mammography in the News Again – Understanding the Research

Screening Mammography is in the News Again!  Published in the New England Journal of Medicine, “Effect of Three Decades of Screening Mammography on Breast Cancer Incidence,” by H. Gilbert Welch, Ph.D, and Archie Bleyer, Ph.D, this new research review shows that screening mammography only increases the amount of early-stage cancers detected and has not decreased the number of late-stage cancers found, as one would hope.  Instead of saving lives, it causes more than one million women to be treated for a disease that they never would have died from.

As an 18-year veteran of breast cancer survivorship, I resolved long ago that I can be a part of the solution or a part of continuing the problem.  There are so many people out there who are promoting myths.  In my own personal breast cancer advocacy work, I knew that before I sent a message, I wanted to make sure what I said was factually correct.  When I was first diagnosed with breast cancer I was told: “Early Detection Saves Lives.”  I believed it at first, until some of my friends started to die of the disease and I noticed some of them were diagnosed with smaller tumors and had a better prognosis than my own.  I began to better educate myself about what that statement about early detection meant and realized in our zest to say something empowering and helpful, we have perpetuated a myth.

This new research by Welch and Bleyer raises serious concerns about the value of screening mammography and clarifies that the effect on mortality rate is likely smaller, with the harm of overdiagnosis likely larger, than previously recognized.  This study is only related to screening and not diagnostic mammograms, where a woman (or man) has a mammogram to investigate whether an existing lump is cause for concern.  There is no debate about the usefulness of diagnostic mammograms.

Welch, from Dartmouth University, has explained his research findings in an easy-to-understand video. Please watch it!

One must consider the fact that there is an extraordinary cost to treating more than a million women for breast cancer.  Surgery, chemotherapy and radiation all cost a woman very much in her life.  They lose body parts, they are exposed to toxic chemicals and treatments, and they lose time with their family, from their job and doing all of the things they love best, while undergoing treatment.  They are put at risk for other diseases, as Robin Roberts was when she contracted myelodysplastic syndrome (MDS) after breast cancer treatment.  Some lose their jobs as a result of debilitating treatments.  Chemotherapy robs others of their fertility or sexual function.  Some women die from side effects of their treatment.  There is a cost to the treatment for breast cancer.

This research reinforces how important it is that we be a part of the solution and that solution involves moving beyond the search for early detection and moving into the cure for breast cancer.  Sign the petition to show that you believe we need to solve the real problem of breast cancer and that you would like the President of the United States to take a leadership position in helping us to end breast cancer.

In November of 2009, YSC responded to the U.S. Preventive Services Task Force’s then newly released recommendations on screening mammography. To learn more, read YSC’s statement.

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Categories: Guest Bloggers

Breaking News from San Antonio: Tamoxifen for 10 Years?

I’m at the San Antonio Breast Cancer Symposium and as you may have seen on Facebook, Twitter, and the news, study results from the ATLAS trial were released here yesterday.  The study suggested that taking Tamoxifen for 10 years, instead of stopping after five years, may be beneficial for estrogen-receptor positive women diagnosed with breast cancer.  But what do these study results really mean and how will they impact young women?

Currently, premenopausal breast cancer patients who are estrogen-receptor positive (their cancer grows in the presence of estrogen) are prescribed Tamoxifen for a course of five years.  The Adjuvant Tamoxifen:  Longer Against Shorter (ATLAS) trial, examined whether there was benefit in continuing Tamoxifen for five more years, for a total of ten.  Study results were reported at the San Antonio Breast Cancer Symposium yesterday and released the same day online in The Lancet.

In the ATLAS study, 6,846 estrogen-receptor positive women around the world were randomly allocated to two groups.  The five-year group stopped taking Tamoxifen at the five-year mark.  The 10-year group continued taking Tamoxifen for another five years.  After 7.6 years of follow-up, study results show a reduced risk of recurrence, reduced breast cancer mortality, and reduced overall mortality, in those women who stayed on Tamoxifen for 10 years.  Patients in the study were 80% compliant with taking their medication.

While a benefit was seen in this study to continuing Tamoxifen for five additional years, these benefits were modest.  Between years 5 to 14 after initial diagnosis, breast cancer mortality was 15% for those women who stopped Tamoxifen at 5 years and 12.2% for women who continued for 10 years.  The cumulative risk of recurrence during years 5 to 14 was 21.4% for women who took Tamoxifen for 10 years, compared to 25.1% in the group who stopped at five years.

Overall, the patient population in this study tended to have low nodal involvement and most participants were over the age of 45 at time of initial diagnosis.  53% of the 10-year group were node negative and 54% of the five-year group were node negative.  Only 16% of both groups had four or more nodes involved.  Also, only 19% of the 10-year group and 18% of the five-year group were under age 45 at time of diagnosis.  In both the five and 10-year group, 89% of study participants were postmenopausal at time of their entry into the ATLAS trial.  In the five-year and 10-year groups , 47% and 48% of patients respectively had tumor sizes ranging from 1 to 20 mm (equivalent to 2 cm or under), while 39% and 38% respectively had tumor sizes between 21-50 mm (2 to 5 cm).

Tamoxifen also has its risks and side effects and the longer treatment did increase side-effects.  In particular, the women who continued on Tamoxifen for 10 years had a higher rate of endometrial cancer (3.1%; 116 occurrences) than those who stopped at year five (1.6%; 63 occurrences), between years five to 14.  The authors stated that this risk is more pronounced in postmenopausal women and that there would be “little risk” to premenopausal women of endometrial cancer.  While death from stroke or pulmonary embolism were comparable between the five-year and 10-year groups, a table showing “Non-neoplastic disease; ever hospitalized or death” shows a higher number of strokes (130 to 119), pulmonary embolus (41 to 21) and Ischemic heart disease (127 to 63) in the 10-year group compared to the five-year group.

Overall, more data is needed and ATLAS data will continue to be gathered and analyzed.  The study authors noted that trials comparing 10 years to five years will need to be followed up for at least 15 years from diagnosis, given the fact that the protective effects of Tamoxifen extend beyond the time that it is taken.  “Longer follow up of ATLAS (and a meta-analysis of all such trials) will be needed to assess the full benefits and hazards throughout the second decade.”  In addition, more data is needed on younger women.

So, what does this study mean for young women diagnosed with breast cancer?

First, if you are estrogen-receptor positive and have been prescribed Tamoxifen, this study supports the benefits of that medication.  Even if you take only five years of Tamoxifen, the benefit of that treatment continues throughout the first 15 years after diagnosis.  Second, if you are a longer-term patient, who is about to complete their five years of Tamoxifen or have completed your five years recently, you may want to speak with your physician about continuing the medication.  The results of this study support that decision, but as noted above, there are drawbacks as well and the benefits appear to be modest.   In addition, there are other side effects to Tamoxifen not examined in this study, including hot flashes and weight gain, which may impact your quality of life.  You will need to discuss your medical history with your oncologist to weigh the risks versus benefits of continuing on Tamoxifen.

Finally, a particular concern with this study is the impact that this study may have on young women’s family planning.  Many young women already wait until they have completed their five-year course of Tamoxifen before trying to start a family.  Will this study cause that delay to become 10 years?  And, are the modest benefits shown in this study worth that?  That is a very personal decision and again, we recommend speaking with your physician.

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Categories: Guest Bloggers

Imagine If

Some days the world of breast cancer that we live in seems larger than I can manage. I want to shake my fists when I hear about another diagnosis or scream out loud when we lose another young woman. Will it ever end?

I know there are many smart and determined people working around the clock to try to cure breast cancer … and I have 100% faith that they will do it, someday. But how long do we have to wait? Is there something we can do to end this once and for all?

The answer is yes.

YSC has joined forces with the National Breast Cancer Coalition (NBCC) to present President Obama with a challenge: The challenge is to make ending breast cancer one of his priorities during the next four years.

Imagine if that happened?

NBCC announced on Tuesday that former President Bill Clinton will serve as the Honorary Chair of Breast Cancer Deadline 2020, NBCC’s strategic plan of action to end breast cancer by January 1, 2020.

So, now we need to get President Obama on board. Imagine how much we could accomplish if the current President of the United States decided to do everything in his power to end this disease. Imagine how fast the right researchers would get funding. Imagine researchers sharing their findings to ensure the deadline was met. Imagine if the entire country unified to make this happen. Imagine that such a cure could lead in the fight against all cancers.

To ask the President to consider this extraordinary challenge, YSC and NBCC must show President Obama that the American people want this to happen. In order to do this, we need to collect enough signatures to show the President we are serious. And we only have two more weeks to do this.

WE NEED YOUR HELP!

Please sign this petition.
Please send an email with the petition URL (below) to everyone at your company .. asking them to sign.
Please send an email to all of your friends and family, asking them to sign the petition.

http://www.youngsurvival.org/get-involved/end-breast-cancer-petition/

So many young women have faced chemo, radiation and surgeries with their heads held high. This is a moment to show every young women with breast cancer that WE ARE ALL FIGHTING WITH YOU … you are not alone!!!

Imagine if breast cancer no longer existed. That’s something worth fighting – and signing – for.

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November 12 Webinar: Healthcare Reform and What the Affordable Care Act Means for You

 

Click to enlarge.

Please join me for my November 12 webinar on healthcare reform, the 2012 Presidential election and what it means for young women affected by breast cancer.

What does the Affordable Care Act mean to you? I think this is a question that we ask ourselves as the conversations continue in the political arena, as well as in our daily lives; whether you are a young woman with breast cancer, a long-term survivor, caregiver, health care advocate or simply interested in better understanding the U.S. system of health care coverage.

As a young survivor, I had a crash course on health care policy upon diagnosis. My professional and personal backgrounds collided that fateful April Fool’s Day in 2009. Upon learning of my diagnosis at age 30, and in the cross hairs of losing my health care coverage, I decided to take a slight change in my legislative policy focus and team up with a group of legislators from across the country to work on the crafting of the Affordable Care Act (ACA).

During this time, I learned that our health care system does not always provide the best options or quite possibly any option at all, when someone is diagnosed with a serious illness. Between me and the state legislators, who were mostly health committee chairs or staunch advocates for health care, we were able to look at the breakdown of the current system and provide valuable insight and input on the federal front to ensure that state implementation would be more seamless and viable.

With this experience, I have put together a webinar focused on information that is relevant to the young survivor community to date. Included in the webinar, participants will learn more about my story and how it intersects with the passage of the ACA; the timeline and main components of the law; highlights for those diagnosed with cancer; what the Supreme Court decision and the election mean for the law; and how to find additional resources to aid in future decision making.

Not only was this a way to take back my health and find all pathways to insurance coverage, but also it was a means to utilize my knowledge for crafting strong policy and negotiating for others. I’m presenting this webinar as a way to give back to the community and better help others as they go through their personal story with cancer and health care. I hope you’ll join me for this informative webinar!

Monday, November 12, 2012
7 p.m. EST/ 6 p.m. CST/ 4 p.m. PST

Reserve Your Seat Now!
www1.gotomeeting.com/register/170997305
or email info@youngsurvival.org

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Categories: Guest Bloggers

Navigating Breast Cancer and Employment

 

Common Concerns:

A breast cancer diagnosis can raise a multitude of questions and concerns – not just questions about treatment and healthcare – but also legal questions about employment, insurance and income.

•    What will happen with my job?
•    How do I ask for time off to see my doctor?
•    Can my employer fire me for missing too much work?
•    If I lose my job, what will happen to my insurance benefits?
•    How will I pay my bills?

In the Breast Cancer Legal Project at the Atlanta Legal Aid Society, Inc., we often hear questions just like these from our clients. I represent clients who are navigating healthcare access issues, applying for long-term or short-term disability benefits, requesting reasonable accommodations from their employers, appealing health insurance coverage denials, applying for Social Security disability benefits and facing disability discrimination. This article is intended to provide you with general information, not legal advice tailored to your unique situation. It is always best to consult with an attorney about your specific employment or insurance questions before taking any action, but finding an attorney to answer your questions when your income is limited is often a challenge. This article is intended to bring you some comfort in knowing that you are not alone in your concerns and that there are resources and organizations out there to help.

Can my employer fire me for missing too much work?

The Family Medical Leave Act (FMLA) is a federal law that can provide up to 12 work weeks of unpaid, job-protected leave in a 12-month period to eligible employees who need to take time off work due to a serious health condition or to care for an immediate family member with a serious health condition. The FMLA does not apply to all employers and employees. To find out whether the FMLA may apply to you or your employer, you can find some general information at these websites:

•    U.S. Department of Labor: http://www.dol.gov/whd/fmla/#.UHndCLQ1b8s
•    Workplace Fairness: www.workplacefairness.org
•    Cancer and Careers: www.cancerandcareers.org

If I lose my job, what will happen to my insurance benefits?

The Consolidated Omnibus Budget Reconciliation Act (COBRA) is a federal law that gives workers and their families who lose their health insurance benefits the right to choose to continue group health insurance benefits for a limited time under certain circumstances, such as job loss, reduction in hours worked, death, divorce and other life events. To find out more about COBRA, you can visit this website:

•    U.S. Department of Labor: http://www.dol.gov/dol/topic/health-plans/cobra.htm#doltopics

What will happen with my job, and how do I ask for time off to see my doctor?  

The Americans with Disabilities Act (ADA) is a federal law that protects “qualified individuals with disabilities” from employment discrimination by qualified employers. Under the ADA, an individual can request a “reasonable accommodation,” such as amodification or adjustment in job responsibilities, schedule or work environment, from a qualified employer.  You can find further information on how the ADA might protect someone with a cancer diagnosis at these websites:

•    U.S. Department of Justice: www.ada.gov
•    U.S. Equal Employment Opportunity Commission: http://www.eeoc.gov/facts/cancer.html
•    For information on requesting a “reasonable accommodation,” you can visit the Job Accommodation Network site at www.jan.wvu.edu.

The Breast Cancer Legal Project (BCLP) and other cancer legal services:

BCLP was created in 2005 to provide cancer-related legal services to low-income breast cancer patients, survivors, and caregivers in metro-Atlanta. We work closely with social workers, healthcare providers and advocates from other nonprofit organizations to identify and resolve the legal issues that negatively impact our clients’ quality of life and impede their ability to focus on survival, treatment and wellness.

Although we specifically serve low-income individuals in the metro-Atlanta area, there are resources available to provide support and guidance to people living with or surviving cancer across the country.

•    The National Cancer Legal Services Network (NCLSN) has a nationwide, online directory of cancer legal services programs. NCLSN “promotes the increased availability of free legal services programs so that people affected by cancer may focus on medical care and their quality of life.”  www.nclsn.org.

•    The Cancer Legal Resource Center (CLRC), a national, joint program of the Disability Rights Legal Center and Loyola Law School Los Angeles, “provides free information and resources on cancer-related legal issues to cancer survivors, caregivers, health care professionals, employers, and others coping with cancer.”  www.cancerlegalresourcecenter.org. They also have state-specific information available online and a national, toll-free Telephone Assistance Line (866-THE-CLRC) that individuals can call.

It is both comforting and empowering to be armed with information about your rights. In the Breast Cancer Legal Project, we know that helping our clients navigate the legal challenges that a cancer diagnosis can bring is essential to encouraging peace of mind and maintaining quality of life.

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Categories: Guest Bloggers

Hurricane Sandy Update – November 5, 2012

 

Dear YSC Constituents, Friends, and Partners -

The building in which YSC’s headquarters is located, at 61 Broadway in downtown Manhattan, re-opened briefly on Monday, November 5, but without heat or phone service. And, we’ve just learned from the building’s management that there will be no heat in the building for the remainder of the week.

Therefore, YSC’s New York office will be closed this week (Nov 5-9th) and, unless the conditions in our office change, the staff in our New York office will be working from home the rest of the week and available via email and their cell phones.

The main YSC phone number is also down as a result of the storm, and we do not have information on when it will be up again. We are deeply sorry for any frustration this might have caused and we will post an update as more of the systems come online.

If you need to reach someone immediately – please email any of the staff below:

 

Jennifer Merschdorf, CEO:

jmerschdorf@youngsurvival.org

 

Stacy Lewis, Program Department:

slewis@youngsurvival.org

 

Lori Atkinson, Community Engagement Department:

latkinson@youngsurvival.org

 

Jenna Glazer, Development Department:

jglazer@youngsurvival.org

 

Suzanne Beckmann, Marketing and Communications Department:

sbeckmann@youngsurvival.org

 

Heather McGrew, Operations and Finance Department:

hmcgrew@youngsurvival.org

 

We appreciate your patience during this time and stay safe!

 

Thank you,

Jennifer Merschdorf

 

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