Finding a cure now...so our daughters won't have to.

Archive for the ‘Patient Advocacy’ Category

Do you know a breast cancer patient who needs a wig?

Posted By on January 10th, 2011 at 10:47 am | 6 comments.

Crickett’s Answer for Cancer is a York, PA-based non-profit providing wigs, head coverings, massage therapies and pampering products for breast cancer patients. Bonnie Julius and Carole Trone founded the organization as a loving memorial to Crickett, Bonnie’s daughter and Carole’s cousin and good friend. After their devastating loss, they decided to fund those things that others might think are frivolous or unnecessary. Their goal is to provide women with hope, inspiration and and the support they need to celebrate their own lives every day, as Crickett did. She saw each day as an opportunity to live life to the fullest and to celebrate the gift of life.

To request services, visit www.crickettsanswerforcancer.org. After completing a simple application, you will be referred to a vendor or service provider in your area for the items or services. Crickett’s Answer for Cancer will pay 100% of the cost directly to the vendor on your behalf. You will have no out-of-pocket expenses.

I first learned about this remarkable service when my sister-in-law in North Carolina was able to get a wig through them during her breast cancer treatment. Since then, I have been happy to include Crickett’s Answer for Cancer in our list of resources for the women who call us for help.

PA Farm Show, Here We Come!

Posted By on January 6th, 2011 at 9:10 am | 0 comments.

Cambria Co. Exhibit OpeningThis year, the PA Department of Health invited us to be a part of the 2011 Pennsylvania Farm Show. It takes place January 8th to the 15th at the Farm Show Complex in Harrisburg. This show is the largest indoor agricultural event in America with over 10,000 competitive exhibits, 270 commercial exhibitors and lots of animals including sheep, pigs, horses, cattle, goats, chickens and rabbits. (Don’t even get me started on the fantastic food offerings!)

Our 67 Women, 67 Counties: Facing Breast Cancer in Pennsylvania traveling photo exhibit will be on display for the nearly 400,000 visitors to view! We will have a PBCC table which will be staffed each day of the show from 10 a.m. to 4 p.m. with lots of materials and helpful information.

Farm Show Packing CompletedIf you’ve ever been to the Farm Show, you know that TONS of people pass through the complex each day, which means we needed to pack up lots and lots of information and giveaways to hand out! This is one of those times when the staff really appreciates our volunteers. To prepare for the big event, Dennis and Gene, two of our regular office volunteers, counted out stacks and stacks of brochures, newsletters, fliers, pens, wristbands and plastic tote bags! Then they boxed up an assortment of things for each day of the event so we are sure to have items left toward the end of the week. This was a very tedious and time-consuming job, yet Dennis and Gene did it without a single complaint. Thanks, guys! We really appreciate your help.

So if you’re planning on coming to the PA Farm Show this year, please check out our photo exhibit and stop by the PBCC’s info table to say hi and pick up some info or a freebie or two. We have plenty ready for you!

Patient Advocacy in 2010: It was a busy year

Posted By on January 5th, 2011 at 10:02 am | 4 comments.

Today is only the third working day of 2011 and we have already talked with three women, all with different issues they need help with. One hasn’t had a mammogram in several years and has no insurance, another is a Medicare patient overwhelmed with co-pays for medical bills, and another is paying over $1,000 a month for insurance due to a pre-existing condition.

This past year, 75 women with breast cancer, or their friends or family members, called the PBCC for help. Often they sounded exhausted and told us that they’d already tried a number of other places and expected that we wouldn’t be able to help them. That just makes us more determined to find the resources they need.

Over half of the questions we hear are about medical bills and co-pays or mammograms. Of the 75 who called,

  • 21 needed financial help with medical bills
  • 20 needed mammograms and were uninsured or underinsured
  • 9 had questions about BCCPT (free treatment program) or other coverage
  • 6 needed help paying for prescriptions
  • 3 were breast cancer patients on the verge of losing their insurance
  • 3 had general questions or concerns about breast cancer
  • 2 needed lymphedema supplies
  • 2 wanted a referral for a specialist or a hospital
  • 2 needed to know where to get prostheses
  • 1 needed a follow-up mammogram, which her insurance wouldn’t cover
  • 1 was awaiting diagnosis and was exploring coverage options ahead of time
  • 1 was looking for information about home health care
  • 1 had questions about legal issues of an employer not allowing time off for treatment

2010 Evening Reception at the Harrisburg HiltonAlso in 2010 we added this question to our online Friends Like Me care package order form: “If this is a self-request, would you like the PBCC’s patient advocate to call you?”

Usually, we find that the information included in the Friends Like Me care package answers all of the questions a survivor may have. But all the recipients we talk with say that the phone call is one more reminder that she is not alone, the PBCC is here for her.

Shopping Resources for Breast Cancer Patients

Posted By on January 4th, 2011 at 9:02 am | 6 comments.

One of the most commonly-requested items here at the PA Breast Cancer Coalition is a list of shops and boutiques across the state that sell wigs, prostheses, and other breast cancer-related items.   For many women who have been newly-diagnosed, this is one of their first questions.

We currently have a list of about 20 boutiques, shops, salons and websites that sell various products geared toward cancer survivors.  They are located from Allison Park to Abington, from Latrobe to Lancaster, and beyond!

If you know of a boutique or shop in PA (or a website with an online store) that sells mastectomy products and/or wigs, please comment below with the name of the company or its website and we’ll investigate it.   If it meets our criteria, it’ll be added to our resource list.

The more we have on our list, the better the chances that one of these shops will be within driving distance of each woman who needs to purchase something!  Thanks for sharing your finds with the 103,000 women in Pennsylvania battling breast cancer!

Insurance Guidebook Saved Breast Cancer Patient $10,000

Posted By on December 17th, 2010 at 10:10 am | 2 comments.

When a newly-diagnosed women or a friend orders one of our FREE Friends Like Me care packages, he or she may request a phone call from our Patient Advocate (that’d be me). We have often thought that the contents of the package may answer many of her questions, so we allow some time for her to receive and review it before I call. This week we learned just how true that is.

I called a woman in Wayne County who received her package after Thanksgiving. She is quite an advocate in her own path to treatment and recovery. She has been researching prescription assistance programs and other community resources. When we were just about to end our conversation, she mentioned that part of her education was to read our insurance guidebook Breast Cancer: Covered or Not?, which was included in her Friends Like Me care package.

Of particular interest to her was the information on pages 102 and 103 about checking for hospital billing mistakes. So she took out her stack of mounting medical bills and sure enough…there was a double billing mistake to the tune of $10,000!

Her hospital acknowledges the mistake and is working to correct it. When she said “Your organization has already saved me $10,000,” it really made our day.

If you or someone you know can use advice in relation to breast cancer treatment and insurance, order your FREE copy of Breast Cancer: Covered or Not? today!  You can also request a Friends Like Me care package be sent to a recently diagnosed woman in Pennsylvania!

Explore Your Options Easily Under the Affordable Care Act

Posted By on November 15th, 2010 at 9:13 am | 0 comments.

Now you can confidentially search which private insurance plans, public programs and community services are available to you with this online tool.  Go to www.healthcare.gov and select “Explore your coverage and pricing options.” Then click on the answers to 4 or 5 questions about where you live (state only, not address), your health care needs, and insurance status.

Information pops up about available resources you may qualify for and how to access them.  Your answers are used by www.healthcare.gov only to generate your best options.  The site does not keep your information on file, and does not ask for your name.  I tested the questionnaire using several fictional scenarios and found the answers to be very comprehensive.

September 23rd: Six Months in to the Affordable Care Act

Posted By on September 23rd, 2010 at 1:25 pm | 0 comments.

On September 23, 2010, the new Patients’ Bill of Rights protections kick into gear, adding to the number of individuals and families benefiting from the Affordable Care Act.  Starting now, these changes go into effect:

  • Children with pre-existing conditions will be able to get insurance coverage for their health care needs.
  • New private insurance plans will be required to cover preventive services, screenings and tests, without co-pays
  • Women will be able to go directly to their OB/GYN without a referral, removing that extra step
  • Your choice of primary care doctor is protected
  • Insurers are prohibited from charging extra when you need emergency care outside the plan’s network

The Healthcare.gov website includes a brief summary of the new restrictions for insurers and new rights for consumers that begin to take effect now.

Breast Cancer Blogs

Posted By on August 30th, 2010 at 10:02 am | 0 comments.

I’ve always had a bit of an obsessive personality.  Just ask my friends, family and PBCC co-workers.  When I get into something, I REALLY get into it.  At least until the next thing comes along.  (For example, in 2008 I set a goal to read 52 books in a year and actually did it!)

Blogs are one of my newest obsessions.  I currently follow 66 different blogs, including this one by the PBCC.  But I’m always on the hunt for more.  I just love finding a new, cool blog to add to my list and scanning the posts multiple times each day.  If you love blogs like I do, here are a few written by some pretty amazing breast cancer survivors.

www.wecanrebuildher.com – Andrea is a young wife and mother who lives in Canada and is fighting breast cancer.  Together with her husband Mark, she blogs about her cancer journey and takes lots of great photos.

www.butdoctorihatepink.blogspot.com – Ann Silberman is a mother, wife, and Middle School secretary in Sacramento, CA.  After her diagnosis in September 2009, she started a blog that’s full of humor and energy.

www.goodcancer.blogspot.com – Another Californian, Jennifer Overbeck was diagnosed in 2006 at age 39.  Though her treatment has been over for some time, she continues to blog sporadically to share news, thoughts on living beyond cancer, and updates from her 6-month checks.

www.cancerspot.org – Jacki Donaldson was diagnosed in 2004 at the age of 34 and has been blogging ever since.  I love her inspirational photos and quotes, as well as her stories of other survivors.  She also frequently shares helpful cancer-related resources that she comes across.

If you have any breast cancer blog recommendations, please send them my way.  I’m always on the lookout!

Fox Chase Mammography Van Coming to Primos, PA

Posted By on August 24th, 2010 at 12:49 pm | 4 comments.

State Representative Nicholas A. Micozzie is teaming up with Fox Chase Cancer Center to offer mammograms to qualified women on Wednesday, September 1st at 9:00 AM.

The mammography van will be located in St. Eugene’s parking lot on Oak Avenue in Primos. For directions, click here.

Women must meet the following requirements:

  • Must be 40 years of age or older
  • Must provide the name and address of your doctor
  • Must have a prescription from your doctor for the mammogram
  • Must not be breastfeeding or have breastfed within the past 9 months
  • Must not have had a breast cancer diagnosis within the past 2 years
  • Must not be currently undergoing treatment for breast cancer
  • Must not have had a mammogram in the past 12 months

Space is limited and appointments are required.  To schedule, contact Rep. Micozzie’s Drexel Hill district office at 610-284-0020.

Pink Friends Like Me Packages Continue to Make a Difference

Posted By on June 3rd, 2010 at 10:45 am | 0 comments.

Here at the Pennsylvania Breast Cancer Coalition, we believe in reaching those diagnosed in the state individually.  The Friends Like Me Care Packages do just that every day.  These pink boxes, which contain valuable information, books, and donated gifts, make it to Philadelphia, Erie, Pittsburgh, Scranton, and everywhere in between.  To date, over 3,400 Friends Like Me Care Packages have made it into the hands of newly diagnosed men and women in PA. 

Included in each package is a quick survey that we ask recipients to complete.  The last question is “What did receiving this Friends Like Me Care Package mean to you?”  Below a quick note that was sent back recently.

My “Friends Like Me” package arrived a few days after meeting with my surgeon and scheduling my surgery.

I cried when I opened the box.  It was a tangible representation of my cancer and a powerful gift.  Filled with information, it empowered me to ask and learn more.  I wanted to be actively involved in my treatment plan.  Along with my surgeon and her staff at Penn State Hershey Breast Center, my family and friends; you too became part of my support team.  Kim Eubanks’ note personalized my package.  I remembered her from church and thought it remarkable that she remembered me.  I’m sure many packages are sent weekly – to remember me and take the time to send a note meant the world to me.  Thanks Kim!

I read Navigating Breast Cancer by Lillie Shockney shortly after receiving it with my cancer information at Hershey.  It dealt with many of the issues I was dealing with like how to tell others and what lies ahead.  Reading the book gave me a sense of normalcy.  Others had gone through the same emotional rollercoaster I was living.  I read her Breast Cancer Survivor’s Club from my Friends Like Me package as a sequel.  The Breast Cancer: Covered or Not by Dr. Linda Rhodes and Pat Halpin-Murphy provided easy to read information on health insurance.  I have insurance through my employer but had only ever used it for wellness and routine family doctor visits.  I read the book right away and called the insurance company just to “double-check” what I thought I knew.  I needed to focus on getting better, not fighting with insurance.

I laughed when I saw the knit hat.  Made from bright, fuzzy yarn, it wasn’t my “style” and chemo wasn’t in my treatment plan, but I will wear it proudly.  It reminds me to laugh each day.  It also serves to remind me that my cancer was found early and with radiation, my outlook is good.  Not everyone is as fortunate.

I read all the books and pamphlets in my package.  My husband wears the pink ribbon sticker.  I wear the “survivor” bracelet and pink ribbon pin.  The angel made by the Girl Scout Troop hangs from the rearview mirror of my car.  All reminders of where I’ve been and how far I’ve come.

In February I had a lumpectomy at Penn State Hershey Medical Center.  I learned that my lymph nodes were clear.  I will have radiation.  I have been blessed.

Thank you,

Cindy

These personal stories are behind the PBCC’s driving force to find a cure now!  Do you know someone who was recently diagnosed?  Visit the PBCC’s Friends Like Me page to request a Care Package be sent FREE of charge!