Breast Cancer and Disability Benefits

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(Editor’s note: This guest post is from Molly Clarke on behalf of the organization Social Security Disability Help. It is not affiliated with the Social Security Administration.) 

Breast cancer and its treatment effects can make it impossible to work. The resulting loss of income and medical insurance can cause a significant financial burden. If you find yourself facing these circumstances, you may be eligible to receive Social Security Disability (SSD) benefits.

The Social Security Administration (SSA) governs two programs that offer financial assistance to people who can no longer work due to an illness or disability.

Social Security Disability Insurance (SSDI) is funded by the FICA taxes that most workers pay into the system. Eligibility is based on an applicant’s work history and the amount of taxes they’ve paid throughout their career. The SSA assigns “work credits” to each quarter an individual works and pays taxes. See if you meet the work credit requirements for SSDI here.

Supplemental Security Income (SSI) is a needs-based program that provides financial assistance to disabled, elderly, or sick individuals who have very little income. Unlike SSDI, SSI is based on financial standing. It is a good option for people who may not have earned enough work credits to qualify for SSDI. Learn more about the financial requirements for SSI here. In some cases, individuals may qualify for both SSI and SSDI.

Breast Cancer Criteria

In addition to the technical requirements listed above, applicants must meet certain medical requirements. The most basic requirement is to meet the SSA’s definition of disability. Essentially this means that you must have a serious health condition that prevents you from working for at least a year.

Although breast cancer can be debilitating at any phase, the SSA has very stringent requirements to qualify for SSD with breast cancer. Unfortunately this can make it very difficult—but not impossible—to qualify with early stage breast cancer.

Typically, applicants’ conditions and symptoms are analyzed by the SSA in accordance with their official guide of disabling conditions known as the blue book. The blue book listing for individuals who have breast cancer requires that your cancer is a carcinoma that has advanced locally, including metastases in your breasts, chest wall, skin, and/or lymph nodes. You may also qualify if your cancer is recurrent and does not go into remission despite receiving appropriate treatment.

Requirements are stringent because cancers that meet these standards are expected to last at least 12 months—satisfying the SSA’s definition of disability. However, if you do not meet these specific requirements, you may still be able to qualify if you can provide medical proof that your cancer and cancer treatments are expected to last at least a year and keep you from working

If it has been determined that your breast cancer is inoperable, unresectable, or has distant metastases, you may qualify for compassionate allowance processing. This program allows individuals with particularly serious conditions to be approved for disability benefits in as little as 10 days. There is no separate application for the compassionate allowance program. The SSA will determine whether or not you qualify and will expedite your claim accordingly.

Starting the Application Process

The SSA requires that applicants provide documentation of their education, employment history, financial history, and most importantly their medical history. You should collect documentation of your diagnosis, laboratory tests, treatments, reaction to treatments, history of hospitalizations, and even personal notes from your doctor and submit them with your application.

It is important to have documents ready prior to beginning the application process so that there are no delays. Once you are ready to begin the application process, you can do so on the SSA’s website or in person at your local Social Security office. If you decide to complete your application in person, schedule an appointment in advance to avoid delays.

The SSD application process can be extremely difficult to navigate. If you find yourself overwhelmed or confused, it may be in your best interest to retain the services of a qualified disability attorney or advocate. He or she will have a thorough understanding of SSD benefits and will be able to guide you through the application process to ensure that you don’t make any mistakes.

Appealing a Denial

Many applications are denied due to lack of medical evidence or small technical errors. If your initial application is denied, do not panic. You are allowed to appeal this decision. It is important to remember that no matter how difficult it may be to be awarded disability benefits, these programs exist to help you. Do not give up. Once you are awarded benefits, you will be able to focus on your health instead of your finances.

Angie’s Choice

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I know, I know, we don’t need yet another blog post about Angelina Jolie’s decision to undergo a prophylactic bilateral mastectomy. She doesn’t need any more attention.

But that’s exactly what drew me to write this–she doesn’t need any more attention. She didn’t have to write that graceful and lovely piece for the New York Times. She could have gone on being one of the world’s most famous women without sharing her secret. But she chose to tell us about her medical choice, in the hope it would help other women.

As usual, people who know absolutely nothing about what it’s like to lose a loved one too young to cancer, who know absolutely nothing about being told you have a genetic time bomb ready to go off–87 percent chance, anyone?–decided to judge her choice.

I have a message for people of the judgmental persuasion. Until you know what it’s like to hear the words “You have cancer,” or to lose your mother or sister or daughter to it, you don’t get a vote. (Even then, you don’t get a vote; but you’re far less likely to want one.) Check the beam in your own eye, if you tend toward the Biblical. If you don’t, let me put it in language you’ll understand. Shut. The. Fuck. Up.

I said it in my 10 Commandments of Breast Cancer and I’ll say it again: Thou shalt not judge someone else’s treatment or reconstruction choices.

My own choice: I had no family history when I was diagnosed five years ago so I opted not to get genetic testing. I also opted for a single mastectomy for DCIS. I know of many young women who opted for the bilateral in that situation. They did what was right for their specific situation and risk tolerance; I did what was right for mine.

One thing I wish I’d seen covered more: Ms. Jolie mentioned how expensive the BRCA test is, more than $3,000; so did a couple of TV stories I caught, but didn’t mention why.

The reason it’s so expensive is because Myriad Genetics owns the patent to the gene, effectively preventing researchers from coming up with other, possibly less expensive alternatives. The case is before the U.S. Supreme Court right now, and I’ve read that the Supreme Court is skeptical of Myriad’s argument. I hope their skepticism translates to a ruling against Myriad.

525,600 Minutes

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Napa toastThis picture is from October, 2011, when my husband Bruce, his brother Jeff, and our friend Pam went to Napa. Pam’s hand is in the lower right in the picture. You can see how swollen it is in spite of the lymphedema sleeve peeking out from the bottom of the frame.

It was Pam’s idea to take the picture of our hands raised in one of our many toasts. She knew we were making memories to last the rest of our lives, in her case, six months. She gave framed copies to all of us for Christmas.

It’s been a year since she left us, a year filled with memories and disbelief that she’s actually gone. We started letting go of some things and hung to others as long as we could. Bruce still has a picture of Pam as his cell phone wallpaper. I swapped mine out a few months ago, but like him, saved her texts. When we went on our second pilgrimage to sleep with the sandhill cranes in March, we planned to laugh over the text messages she sent on our previous trip. We were both shocked to see her text messages had disappeared. It felt like she was being erased.

The song “Seasons of Love” from Rent asks how you measure a year, or 525,600 minutes. “In daylights, in sunsets, in midnights’–then asks “How about love?” and urges us to “Celebrate” and “Remember a year in the life of friends, Remember the love!”

525,600 minutes later it still hurts like hell, but we remember the love.

My other posts about Pam:

How to Get Comfortable on Tweetchats

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BCSMI’m writing this post in response to a plea for Twitter mentors from Jody Schoger, one of the moderators of the Breast Cancer Social Media (#bcsm) tweetchat. It takes place every Monday night at 9 p.m. Eastern time and has rapidly become one of the most popular tweetchats out there. Jody said there are quite a few lurkers out there who need some help getting started.

The first thing you should know is it’s common to feel intimidated by tweetchats and Twitter in general when you’re first getting started. I remember how scared I was the first time I attempted to join a conversation on Twitter. It’s like walking into a giant cocktail party where you don’t know anyone. I also remember how thrilled I was the first time someone I didn’t know started following me on Twitter. He’s a doctor who since deleted his account (at least that one–he could still be out there somewhere), but I will always remember how he made me feel welcome and would explain things like what YW means (you’re welcome). I gradually become comfortable out there and you will too.

The other thing you should know is that #bcsm is one of the fastest-paced chats out there. So if you’re thinking, Wow, I can’t keep up!, it’s not just you. I followed along with another popular healthcare tweetchat one night and it was positively sedate by comparison. #bcsm is definitely like drinking from a fire hose.

There are a couple of things you can do to keep up. One way is to use tweetchat. You can sign in with your Twitter account and it will scroll all the #bcsm tweets. You can set the refresh speed and you don’t have to enter the #bcsm hashtag with your tweet. Another way is to use tweetdeck and create a #bcsm column where only those tweets will show up. I typically use both because sometimes one or the other will cough up a hairball.

That’s the technology side if it, but how do you get over feeling shy? Start slow. Introduce yourself at the beginning of the chat. Mention why you’re here. If you’re feeling shy because it’s your first time on the forum, feel free to say that. If someone makes a comment you love, say so. !f you have a question, ask. If someone says something that reminds you of your own experience, share it. If you don’t agree, that’s okay too, just remember to be respectful. It’s a conversation just like the conversations you have offline (aside from the fire hose aspects).bcsm-team_0

Finally, remember, you are talking to people, like #bcsm’s moderators and hosts: From left, Dr. Deanna Attai (@DrAttai), a breast surgeon who helps #bcsm and the public at large make sense of technical medical issues and is a member of the American Society of Breast Surgeons. In the middle is three-time cancer survivor and moderator Alicia Staley (@stales), and on the right is writer/survivor/moderator Jody Schoger (@jodyms). They are three of the most welcoming people you could ever hope to chat with.

The topic varies every week and ranges from dealing with mets to what cancer does to relationships, to the “open mike night” scheduled for this coming Monday, March 18th. Please feel free to join in.

The Gift

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angel devil bra not flippedIt showed up on Tuesday. When I got home from work a very large box was on the kitchen deck. I figured it had come to the wrong address but it had my name on it; then I saw it was from Pam’s husband and slowly started connecting the dots.

It was the angel-devil bra that Pam modeled in May 2011 at the ArtBra KC event. The people who won it at auction gave it to her, and she displayed it on a dress form in her bedroom. It showed up practically a year to the day after the last time we saw her.

After shedding a few tears and raising a glass of Pam’s favorite Pinot Noir in her honor, we gave the bra and dress form a place of honor in our closet. I sent Eddie a thank you email and he said he knew Pam would want me to have it. He also said that I would truly value, appreciate and enjoy it.

He was right.

Pam artbra cover

Sorry Business

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       “The truth comes out of this hairbrush.” – Dula Nurruwuthun

If I could, I’d create a pole so high
it would pierce the sky, and still
would not be as tall
as you walked in this life.
I would summon truth
from my brush made of hair
to tell of your life’s essence;
the white of your pure intellect,
the green of your calming garden,
the red of your fierce heart.
It would whisper
the rose-gold of a Perth sunrise,
sigh the blue of deep absence
and my tribute would shimmer like tears
to keep your spirit company
until the weary wood lies down,
the colors fade like daylight
to velvet night,
and I am left with
this sorriest of business.

-for Rachel Cheetham Moro, 1971-2012

On the islands north of Australia, the mourning period is known as sorry business. Some funerals include carved personal totems with designs applied by brushes made of human hair.
~ from an exhibit at the Seattle Art Museum

© 2012 Jackie Fox

Published in Issue 11 of Touch: The Journal of Healing

A Meeting of the Minds

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The above tweets are from the “Healthcare; Education; Research: Evolution or Revolution?” translational health sciences colloquium held at the Lodge at Torrey Pines on Thursday. It was my great honor to live-tweet the conference on behalf of my employer, HDR Architecture, which cohosted the event along with Eric Topol, MD, director of the Scripps Translational Science Institute and author of The Creative Destruction of Medicine; Michael Johns, MD, chancellor and EVP for health affairs, emeritus, Emory University and co-author of Predictive Health, and Bill Brody, MD, PhD, president, the Salk Institute for Biological Studies.

In addition to Drs. Topol, Johns, and Brody, the line-up was a Who’s Who of thought leadership in medicine. Dr. Nancy Snyderman, NBC’s chief medical editor, spoke on media’s responsibility to translate complex medical information without talking down to the audience, using her recent Rock Center interview with Dr. Topol as an example.

Denis Cortese, MD, president/CEO emeritus of the Mayo Clinic and director of Arizona State University’s Healthcare Delivery and Policy Program, shed light on the problems we face trying to move our healthcare system to a more preventive model. He said Medicare “pays to keep us sick;” among other ways, by not reimbursing  care provided by nurse practitioners. Another problem is the lack of interoperability among electronic medical records systems, a requirement doctors recommended while meaningful use requirements were being created, but was removed.

That’s when I started wishing our colloquium had been made mandatory attendance for members of Congress. I wished it again when a spirited discussion took place on randomized clinical trials. They take too long to develop,17 years on average; they cost too much to develop, $80,000 per person; but as one attendee pointed out, it’s the best we have right now. The debate was both respectful and ferociously intelligent, where so much of what passes for debate in our political arena is just ferocious.

Dr. Topol likened the digital medical revolution to Gutenberg’s printing press in the way each of them democratizes knowledge. He told us about a $99 device he uses to monitor his sleep patterns, compared to a $3,000 lab test. He jokingly added that all the price points seem to be $99, and Anne Wojcicki, founder of genetic testing company 23andMe got a laugh later when she said they had just reduced their DNA analysis product to that exact price point.

Dr. Topol also showed us his genome, which he keeps on his iPad using an app called My Genome. At that point I felt like I had wandered into a Ray Bradbury novel. I will own up to some fear about what this brave new world of technology will do to the doctor-patient relationship, but Dr. Topol makes it seem like common sense. As he pointed out, we have sensors on our cars but not our bodies, and which one is more important? I took more hope later when Dr. Snyderman said the technology-based change in doctors’ roles may “free us to focus on our role as healers.”

Process was a large part of the discussion. Dr. Garry Neil, representing the cross-industry pharma group TransCeleration, talked about how in the current clinical trial system, four pharma companies will send someone to the same investigational site. The industry, which spends $34 billion a year on clinical trials compared to $1.8 billion for the National Institutes of Health, is working on ways to collaborate and streamline the clinical trial process.

Elias Zerhouni, MD, former director of the National Institutes of Health and president of global R&D for Sanofi, said we are putting young doctors and researchers under so much pressure to provide service they don’t have time to ask the right questions. He said “Nature is trying to tell us something” when cancer’s pathways include 270 brakes and 30 accelerators (oncogenes). Yet we are focused on what speeds it up, not what stops it.

In case you are wondering where patients were in all this discussion, wonder no more. Dr. Cortese said the only stakeholder in all of this is the patient; yet the patient is the one missing from the stakeholder meetings and conferences. Putting the patient at the center was a common thread. Every time someone talked about how patients must be at the core of future models, I kept wishing my #bcsm buddies and other patient advocates could be there. Every one of these doctors did their profession proud.

Speaking of which, I was very proud to be my employer’s social media reporter for this event. HDR Architecture is to healthcare and science/technology design what these doctors are to medicine and healthcare policy. Technically, I don’t even work for the architecture company; I work for the parent corporation HDR, Inc. But as a breast cancer survivor and past, current and future patient, I have always taken immense pride in the work of our architecture teams. One of the presenters was Dr. Joanne Smith, head of the Rehabilitation Institute of Chicago. Teamed with Gensler, we are designing a facility that not only will put RIC researchers in close contact with clinicians, it will put them in close contact with patients. This is nothing short of a revolution.

I could go on, but this post is already twice as long as what I typically write. We used the hashtag #ResearchtoLife if you want to look up more of our tweets, including quotes from the rest of our stellar line-up not mentioned here. We’re also planning a Storify summary but in the meantime, you might want to check out the story by TenderDaily.