2020 Metavivor Virtual Stampede

Each October, a group of men and women, of all ages and races and stages of breast cancer, descend on Washington DC to participate in several events. 2018 was the first year Elliot and I traveled to DC for the Metavivor Stampede — I wrote about that experience and you can access that article here. Last year, in 2019, the event was larger and included the play, IV Our Lives — I wrote about that experience and you can access that article here.

As with many of the activities in 2020, the Stampede has gone virtual and that has created a whole lot of different and interesting new tasks, but also new and interesting pros, like being able to include more people, the people who wouldn’t have been able to travel to DC to advocate in person. To answer a question that I often get — NO, you don’t have to be a metastatic patient to participate, just a concerned citizen who wants to support someone you know with metastatic breast cancer. Frankly, that applies to a whole lot of people!

Here are the steps to participate:

  • First, go to the website for Metavivor to register. Your registration means that you will get updates and details and be counted as a participant in the Stampede.
  • Second, also on the Metavivor website, view the trainings. Each training was conducted live over the Spring and Summer months, but are available for everyone to view now. Each session is about 30 minutes and is a very similar training that we received in person in DC in 2018 and 2019.
  • Third, find your state Captain. Metavivor has asked individuals in each state or region to head up the organization and scheduling and help with questions particular to that state or area. I suppose no one who knows me is at all surprised that I’m the Florida Captain, although I think I prefer Organizer, because that’s really what I’m doing.
  • Finally, if you prefer, you can schedule your own meeting or simply send an email or letter to your representatives.

The Executive Director of Metavivor, Sonia Negley, is your best contact for determine who is the Captain/Contact in your area. Her email is: sonya@metavivor.org. There are so many different ways to participate and help advance the concerns highlighted by Metavivor in partnership with the Health Lobby organization.

What I’ve offered each of the volunteers here in Florida is that I will attend any of the meetings with them and handle the legal/detail issues and overall asks if they don’t want to. All the volunteers need to do is make sure I have the name of their CongressPerson and are willing to tell their story. I’ll be conducting some training calls just in case anyone wants to practice their story (I like to call this an elevator pitch) before the day of the presentations.

What will we be addressing during this Stampede?

There are three issues we’re focusing on for 2020:

  • First, thanking our representatives for the increase in funding last year for research into metastatic breast cancer through the NIH and NCI. The trainings break down the specifics for both and how each are funded. After thanking them for the increase, we will be asking for further funds to be allocated and to be earmarked for metastatic breast cancer research.
  • Second, asking for the The Metastatic Breast Cancer Access to Care Act H.R.2178 (House) and S.1374 (Senate) be sponsored by each of our representatives. This act would eliminate the waiting period for Social Security Disability funds for MBC patients (currently 5 months) and the waiting period for access to Medicare for MBC patients (currently 24 months after qualifying for Social Security). There is precedence for this waiver as ALS patients already are given both immediately.
  • Third, asking for The Cancer Drug Parity Act  H.R.1730 (House) and S.741 (Senate) to be sponsored by each of our representatives. This act would ensure that any cancer drug be the same cost for patients regardless of how it is administered (pill, injectable, IV, etc) and regardless of the place it is administered (hospital, clinic, doctor’s office, home, etc). This bill would assist all cancer patients, not just those of us with MBC.

However you decide to participate, please consider doing something on this issue for all of us. The more voices, the more requests, the more constituents who contact their elected officials, the more progress we can make.

Any other questions? Let me know!

Experience applying for disability benefits

Disclaimer: I’m a lawyer in Florida only and this post is about my personal experiences applying for disability benefits. Nothing in this post or in any of my other posts should be considered legal advice. If you have legal questions, you should get in touch with a legal professional with experience in the issues you need help with.

When I was diagnosed with Stage IV Metastatic Breast Cancer (MBC), I realized very quickly that the stress I’d been carrying as the owner of a law firm was not something that could continue. Since my husband and I prepared well, I have a private disability policy that is quite comprehensive along with disability riders that mean we don’t have to continue paying for the life insurance policies that will fund my trust and provide funds for my husband and my boys after I die. The private policy gave us the freedom to do what needed to be done and for my husband to not carry as much of the financial burden. We did set up our lives based on two incomes, after all.

And yet, I knew that I’d paid into social security while I have been working (since 16) and that I could access those benefits as well. I’d worked a bit with public benefits when I was working with children in foster care as a Guardian ad Litem (GAL) or Attorney ad Litem (AAL), so I knew enough to be dangerous. It took a little research and some time gathering my medical information and I was able to apply for benefits from the comfort of my own home.

The first item I researched was eligibility. The good news about having a terminal illness and applying for disability is that there isn’t a need to prove my limitations, the things that are still hard to do. Based on my diagnosis, I was eligible for funds and also eligible for a more expedited review. The bad news about my eligibility is that there is a waiting period of five (5) months. Abolishing this waiting period is one of the subjects of a bill still pending in Congress as it literally makes very little sense. Once one has MBC, there’s no coming back from that.

The second item I researched was when I should apply. After that 5 month period expired, there wasn’t a proscribed timeline, but I learned that I could only get twelve (12) months of back pay. I was officially diagnosed with MBC in June of 2017, so the initial 5 month waiting period ended in December of 2017. In order to get all the possible funds, I had to then apply no later than December of 2018 otherwise there would be funds that I would never receive. So, that’s what I did.

When I was actively practicing law, the children who received disability benefits for themselves or the children who were dependents on someone who was receiving disability benefits and thus received derivative benefits, made calculating child support quite complicated. From that experience, I knew that my two (2) boys would be entitled to their own derivative benefits because of accessing mine. I had this in the back of my mind as I worked to gather the information I needed to apply.

When I sat down to fill out the online disability application at SSA.gov, I had too much information! I literally copied and mailed over 200 pages of medical records, also way too much. At the same time, I wasn’t worried that I missed anything! The application took me over an hour to fill out and while I had everything I needed to fill it out, I did have to do a lot of looking and hunting for specific dates and information.

Once I had filled out the application, then I settled in to wait. In my research, I found that the initial review was supposed to occur within thirty (30) days and I set an alert to ensure that it indeed happened. It didn’t, no huge shocker there. I had to call and follow up and discovered that the initial review had never happened and my information had not been sent for review by a medical professional. That happened the day I called and within a week or so, the initial funds arrived.

The process was relatively painless and I’ve not been hit with the request to review the benefits I’m receiving, yet. One thing I discovered while working with foster children is that there are some times when you just need a lawyer who knows the lay of the land. Normally, the lawyers who assist people with applying for social security are paid a percentage of what they are able to obtain for the client. The lawyers who work with me through my non-profit have committed to handling at least one disability case (meaning the ones that go to court) per year for free for a stage IV patient. Super helpful in cases where the social security office isn’t doing the right thing.

We need Help!

Right now there’s a bill before Congress called the Metastatic Breast Cancer Access to Care Act (H.R. 2178). It’s the second time it’s been introduced, sponsored this time by Republican Peter King (NY-2) and Democrat Kathy Castor (Fl-14). A companion bill has also been introduced in the Senate by senators Martha McSally (R-AZ) and Chris Murphy (D-CT) as S. 1374. If passed, it would waive the five-month waiting period for Social Security Disability Insurance and the 24-month waiting period for Medicare coverage.

With a median survival rate of three years, most metastatic breast cancer patients won’t live long enough to receive Medicare under the current regs. That means they die in debt which they leave to their grieving family members or for the taxpayers at large to pay through charity care reimbursements hospitals receive from the government.

A study last year by the American Society of Clinical Oncologists found that 25% of cancer patients also suffer from financial toxicity, meaning they don’t have the money to pay for medical care or household expenses due to their disease. The result: they forego medication, tests and doctors appointments, leading to painful and tormenting premature deaths.

“The current safety net system is more tailored to the needs of individuals with chronic and long-term illness that undermines their ability to work, and does not meet the needs of individuals facing catastrophic events and complex ongoing care,” said Michael Kovarik at METAvivor.

METAvivor is asking people to write to their legislators, asking them to co-sponsor the bills to raise the ante this time that the legislation will pass. So far, it has 101 sponsors in the House.

I encourage anyone in the United States reading this to go to http://www.congress.gov and type the bill numbers (H.R. 2178 and S 1374) into the search bar. Click on the bill, then scroll over to the tab that reads “co-sponsor” and click there to find out if your legislator is a co-sponsor. If you don’t have your rep’s contact info, you can go to http://www.house.gov or http://www.senate.gov, type in your zip code and their information will pop up.

METAvivor has made it easy for us by providing this script:

 I write today as a constituent and as an advocate for the metastatic cancer community to ask that your office please cosponsor the bipartisan Metastatic Breast Cancer Access to Care Act (H.R. 2178 f or S 1372). This common sense legislation would fast track disability and healthcare benefits (the current waiting periods are a major challenge for many affected individuals and families). 

If you’re writing to your congressman or woman, add: To cosponsor H.R. 2178, please reach out to Deena Tauster in Cong. Peter King’s office at deena.tauster@mail.house.gov or 5-7896 or Elizabeth Brown in Cong. Kathy Castor’s office at elizabeth.brown@mail.house.gov or 5-3376 

If writing to your senator, add: To cosponsor S. 1374, please reach out to Emily Crow in Sen. Martha McSally’s office at Emily_Crow@mcsally.senate.gov or 4-2235 or Elizabeth Darnell in Sen. Chris Murphy’s office at Elizabeth_Darnall@murphy.senate.gov or 4-4041.

Those of us in the metastatic breast cancer community are aware that there are many others living with metastatic cancer. While this current law only applies to those of us with metastatic breast cancer, it is the first step towards expanding these same benefits to include all metastatic cancer.

Connect IV Legal Services, Inc.

Toxicity is a word that describes many things related to a cancer diagnosis.  There is toxicity from the medication we take; we are concerned about the toxicity of the substances in the world around us, in the food we eat, in the things we put on or in our body; however, in my humble opinion, there isn’t much of a spotlight on the horrendous financial toxicity that accompanies a diagnosis.

Having been a lawyer all of my professional life, I’ve personally worked with and walked through a variety of crises, I was still shocked at the far reaching effects of financial toxicity.  The sheer amount of go-fund-me accounts and wish-lists and just requests for help has been astonishing to me.  I see women going through the worst crisis of their entire lives who have to get up and go to work every single day to keep insurance, to keep a roof over their heads and it’s awful.  The herculean efforts to appear normal and put together when the toxic effects of a cancer diagnosis eats away at anything that is good is not helpful

After noticing how many women are turning to Legal Zoom or online forms or forums or legal advice from non-lawyers, I decided to intervene.  No one who knows me would be surprised how I began commenting on posts or calling and doing my own research to connect women with lawyers able to help.  There is so much that so many don’t know!  I know how blessed I’ve been that I have so many attorney friends–I’ve a pretty extensive database of people I can call on when I meet someone who needs help that I’m expanding all the time.

Connect IV Legal Services was born and officially became a 501(c)(3) on January 1, 2019.  Why?  Because there is such a need and because I want to be able to offer tax deductibility to anyone willing to help.  I’ve not encountered many who weren’t willing to help and there is such a need in the breast cancer community, but especially within the metastatic community.  The fact remains that I, as a lawyer, can often get past the gate keepers and it is also harder to say no to a fellow member of the bar rather than an individual.

If you or someone you know needs legal help, here are some general tips:

  1. Most communities have local Bar Associations.  Usually this is not the state Bar Association, but one in your local community.  Sometimes this local Bar Association is named for your town or maybe your county.  Doing a google search for your community and “Bar Association” usually turns up something.  Once connected to the proper organization, the best thing to ask for is their medically needy group.  It can take some time and effort to get connected to the right place, but most organizations have this group.
  2. If a local Bar Association is not able to help, then looking at the website for the State-wide Bar Association could be helpful.  There are usually lawyer referral services that may have a medically needy component, just not as often as local Bar Associations.
  3. Contacting your nurse navigator or patient advocate or social worker at your cancer center may net some local resources.  We lawyers are often on boards or are connected to local organizations.
  4. Local law schools often offer clinics or have alumni groups of lawyers or law students willing to help for the educational experience or nominal fees.
  5. Referral organizations like Connect IV are often in specific communities.

If all else fails, send me a message.  I’ve been able to steer many fellow metsters in the right direction and I’m always willing to make some calls and ask for help.  I can be pretty tenacious when I need to be. 😉

Inaugural Orlando METSquerade

February 2, 2019.

Last summer, I met Lindsey Scholl at a conference in Tampa and she was the first to tell me that the wildly successful model of holding METSquerades to raise funds for Metavivor that started in Arkansas was coming to Orlando.  I immediately knew that I wanted to be involved.  I live in Miami now, but Orlando was my home for nearly 20 years and for my husband, even longer.

It was a labor of love for us metsters as we worked hard to put together an event that honored the men and women we lost in 2018 as well as those of us still living with Stage IV metastatic breast cancer.  Lindsey and her family did the most work and their efforts were not unnoticed by the crowd of more than 500 who packed the ballroom at the Loews Sapphire Falls Resort at Universal Studios in Orlando, Florida.

Our featured speaker for the evening, Lisa Quinn, talked about how she just started her 8th and final line of treatment.  There are no treatments left for her after this one fails to control her cancer and the only way she will live to be with her two children is for research to find more treatments for her.  She is living her life to the fullest and spending time with her children as much as she can in the middle of IV chemo.  My heart hurts for her and her family and yet she took time from her vacation to come speak before a crowd of strangers and tell her story.

During dinner, there was not a dry eye in the house after watching the Angel video that Jennifer Pace created.  Jen had been released from the hospital Saturday morning and then came Saturday night to the event.  That’s what living with Stage IV metastatic breast cancer looks like sometimes. Others that hoped to join weren’t able to because of illness, but they were with us in spirit.

I took charge of the living obituary project and am so thankful I got to interact with and learn more about the other women who are living with Stage IV metastatic breast cancer and thriving.  Each of them wrote a unique tribute to themselves, focusing on what makes them an individual and what they want to be remembered for.  The audience was reminded that without their generous giving, all of the living women honored would join the angels in the video.  Powerful stuff.

Being surrounded by family and friends at such a poignant event was immensely moving.  Watching the video featuring so many women that I got to know who were murdered by breast cancer in 2018 was both difficult and motivating.  One of the women honored at the event by her family and friends was one of the first women living with Stage IV metastatic breast cancer that I met online in 2017, right after I was diagnosed.  She died in 2018.  How can one not be moved to contribute to the legacy these women left behind?*

We did a great deal to raise funds for metastatic breast cancer research through Metavivor on February 2, 2019, but it was a drop in the bucket compared with the funds needed to fund the life-saving research for those of us living with this terminal disease.  We honored the women who have lost their lives as much as we can; however, the only way to truly honor their lives and deaths is to carry on their work, carry on their torch, carry their lives with us as we continue to put pressure on the powers that be to allocate sufficient funds to be meaningful to us living with this terminal disease.

Check out Metavivor.org and give to the only US organization that gives 100% of the funds they raise to Metastatic breast cancer research.  I’m not aware of any other organization in the US in that category and there are a lot of organizations that ostensibly raise money for research and yet keep most of it.  Putting money where it can be most likely used for the most good is important and could save my life as well as the other amazing women who are living with Stage IV metastatic breast cancer.

We are worth it.


* We didn’t have any men living with stage IV metastatic breast cancer with us at the event, but I do want to note that men do get this same diagnosis and also tend to pass away at the 2-3 year mark as well.