Learn To Make Change With Your Young Adult Cancer Story

wave

Want to learn to tell your story to make change?

In a 2-hour, online workshop at Lacuna Loft, we’ll delve into how you can turn your young adult cancer story into advocacy. Advocacy comes in many different shapes and sizes so we’ll talk about what it might mean to you and how to go about shaping your own narrative into the change you want to see around you. The workshop will be interactive and equip you with the skills you need to turn your story into advocacy.

The program is open to young adult cancer patients, survivors, and caregivers and is scheduled for Tuesday, May 26th. 2:30-4:30 pm PT / 4:30-6:30 pm CT / 5:30-7:30 pm ET.

When you sign up for the workshop, you’ll get a confirmation from the system that you’ve registered. Then a few days before the workshop occurs, you’ll get an email from Lacuna Loft explaining how to join the video chat. ***You’ll need the link that we’ll provide you, a headset with a microphone, and a webcam.*** [ The webcam is very important. The workshop will be interactive so the other participants need to be able to see your face! 🙂 ]

What if I’ve taken the workshop already?  At this time, the workshop has not changed in between sessions.  A ‘Round 2’ of the workshop is in process though and we’ll debut it in the fall!

Help End Surprise Billing

old fashioned telephone

Here at Lacuna Loft, we find it extremely important to let you know when something comes across our radar which impacts you and other young adult cancer survivors like you.  Today is one of those days!  We just learned of this advocacy opportunity from LLS and needed to share!  Take action TODAY!

If you’ve ever received a medical bill that you weren’t expecting, you probably felt confused, worried – maybe even angry. And you’re not alone.

Surprise billing has become widespread and can have a huge impact on cancer patients and their families. It’s what happens when a patient who has insurance visits an in-network provider or facility, thinking they’re covered. But at some point during the visit, they see a doctor or get a lab test that is out-of-network – without even knowing it.

Then, weeks later, they get the bill – and it can total thousands of dollars that they weren’t expecting to pay for the care they received.

Surprise billing can be financially devastating. It is absolutely crucial that lawmakers take action to protect patients.

Right now, Congress is considering legislation that would protect patients from surprise medical bills without increasing their costs. Call your representative right now and tell them to stand with cancer patients and put an end to surprise billing: Dial 1-844-906-0789 for more information and to be connected to your representative’s office.

Cancer patients have enough on their plate without having to worry about unexpected medical bills. Congress needs to end surprise billing to protect patients, no matter where they live or what plan they have.

There is strong bipartisan support for a solution to surprise billing – and this is a key moment. As congressional committees are debating legislation next week, we need them to hear from you that you expect them to get this done.

Your member of Congress needs to hear from you: It’s time to put an end to surprise medical billing that can financially devastate cancer patients.
Call 1-844-906-0789 now.

Where We’ll Be In 2020

busy meeting

Lacuna Loft has over a dozen programs running and almost everything happens online.  That means that no matter where you live, you can join in on the great connection with other young adult cancer patients, survivors, and caregivers that happens behind our virtual doors.  I have to say ‘almost everything’ though because we do attend in-person conferences and events throughout the year and whenever we do, it is always such a delight to meet program participants in person too!  If you are attending one of the events where we’ll be, make sure you say hi!  We’d absolutely LOVE to meet you!

This year we are attending:

March-June is conference season in the oncology world and we’ll be all over the place talking about young adult cancer survivors to anyone who will listen!

Sign Up For The How To Turn Your Story Into Change Workshop

water drops

Join the next How to Turn Your Story Into Change Workshop!  (Note, we used to call this program ‘How to Turn Your Story Into Advocacy’!)

In this 90 minute, online workshop at Lacuna Loft, we’ll delve into how you can turn your young adult cancer story into change. Change comes in many different shapes and sizes so we’ll talk about what it might mean to you and how to go about shaping your own narrative into the change you want to see around you. The workshop will be interactive and equip you with the skills you need to turn your story into change.

Who: young adult cancer patients, survivors, and caregivers.

When: Thursday, August 22nd. 5-6:30 pm PT / 7-8:30 pm CT / 8-9:30 pm ET

How does it work? When you sign up for the workshop, you’ll get a confirmation from the system that you’ve been confirmed into the workshop. Then a few days before the workshop occurs, you’ll get an email from Lacuna Loft explaining how to join the video chat. ***You’ll need the link that we’ll provide you, a headset with a microphone, and a webcam.*** [ The webcam is very important. The workshop will be interactive so the other participants need to be able to see your face! ]

If you’ve already taken part in this particular workshop, this month’s event isn’t for you. But! We’ll be figuring out a follow up to the workshop in the coming months and will let you know when that is announced.

Join the Next How to Turn Your Story Into Advocacy Workshop!

microphone with colorful backdrop

In a brand new, 90 minute, online workshop at Lacuna Loft, we’ll delve into how you can turn your young adult cancer story into change.  Advocacy comes in many different shapes and sizes so we’ll talk about what it might mean to you and how to go about shaping your own narrative into the change you want to see around you.  The workshop will be interactive and equip you with the skills you need to turn your story into advocacy.

Who: young adult cancer patients, survivors, and caregivers.

When: Wednesday, May 29th. 4-5:30 pm PT / 6-7:30 pm CT / 7-8:30 pm ET

How does it work? When you sign up for the workshop, you’ll get a confirmation from the system that you’ve been confirmed into the workshop. Then a few days before the workshop occurs, you’ll get an email from Lacuna Loft explaining how to join the video chat. ***You’ll need the link that we’ll provide you, a headset with a microphone, and a webcam.*** [ The webcam is very important. The workshop will be interactive so the other participants need to be able to see your face! ]

If you’ve already taken part in this particular workshop, this month’s event isn’t for you. But! We’ll be figuring out a follow up to the workshop in the coming months and will let you know when that is announced.

Want to Make Real Change In 5 Minutes?

telephone booth

Young adult cancer patient and survivor stories and voices are powerful.  When you use your voice to help make change, you are helping yourself and every other cancer patient and survivor who comes after you have better access to support and care.  This morning I got an email from the Leukemia & Lymphoma Society with really important information on how you can, in just a few minutes, make change with your voice in a very tangible way.  It only takes a few minutes to call the number below and they’ve even provided speaking points so you don’t have to figure out what to say by yourself if you don’t want to!  Will you call today?  I did!

Congress is considering an important bill this week that would stop the spread of dangerous junk insurance plans which discriminate against patients with pre-existing conditions. This is just one of seven bills that have been packaged together to protect and expand meaningful health care access and promote affordability for patients.

We have a chance to pass this meaningful legislation and protect patients, and we need your voice with us to convince Congress to act. Will you make your 1 minute call today?

Just dial 1-855-980-5634 to be connected with your representative – a recording will walk you through some talking points, and we’ve also included a script below. When someone at the office picks up, just say:

Hi, I’m [your name], one of your constituents from [your city]. I’m calling to ask my elected officials to stand with cancer patients and vote YES on H.R. 987 to stop discrimination against patients based on pre-existing conditions. The Strengthening Health Care and Lowering Prescription Drug Costs Act will protect and expand meaningful health care access and promote affordability for patients across the country.

[If you want, you can tell them why this issue matters to you and your loved ones.]

It’ll only take a minute, but your quick call will help rein in junk insurance plans.

These plans are meant to cover short periods of time – but they use dangerous loopholes to avoid important patient protections: they often have no limit on cost-sharing, no guaranteed coverage for essential cancer care like prescription drugs and no protection against annual or lifetime limits on care. Without these protections, cancer treatment is often out of reach.

Please call 1-855-980-5634 today to support H.R. 987 and then forward this message to your friends and family and ask them to do the same.

Brand New Advocacy Program!

microphone with colorful backdrop

In a brand new, 90 minute, online workshop at Lacuna Loft, we’ll delve into how you can turn your young adult cancer story into advocacy. Advocacy comes in many different shapes and sizes so we’ll talk about what it might mean to you and how to go about shaping your own narrative into the change you want to see around you. The workshop will be interactive and equip you with the skills you need to turn your story into advocacy.

Who: young adult cancer patients, survivors, and caregivers.

When: Tuesday, April 30th @ 5 pm PT / 7 pm CT / 8 pm ET.

How does it work? When you sign up for the workshop, you’ll get a confirmation from the system that you’ve been confirmed into the workshop. Then a few days before the workshop occurs, you’ll get an email from Lacuna Loft explaining how to join the video chat. ***You’ll need the link that we’ll provide you, a headset with a microphone, and a webcam.*** [ The webcam is very important. The workshop will be interactive so the other participants need to be able to see your face! ]

Cancer Care by Zip Code: Examining Geographic Health Disparities in the US

NY houses

ASCO Connection recently published an article talking about health disparities (“a term commonly used to describe differences in incidence, prevalence, mortality, and burden of cancer related to conditions among specific populations, including racial and ethnic minorities, sexual and gender minorities, older adults, and rural patients, among other groups”…that is a mouthful!) based on where someone lived who was diagnosed with cancer.  In the world of cancer survivorship, Lacuna Loft sees people from all over the country.  We have participants who are based in urban areas but for whom getting to a place for survivorship support is cumbersome all the way to people who live rurally and have no cancer center (or other known young adult cancer survivors) within a hundred miles.  This article isn’t based on young adults specifically, but it underlines the effect that geography has on outcomes…on whether people are surviving their cancer.

“Exciting new breakthroughs in cancer research are helping to make great strides in what is possible for patients with cancer. But they are not necessarily leading to equitable disease outcomes.

According to the Centers for Disease Control and Prevention (CDC), while the overall age-adjusted incidence of cancer is lower in rural areas than urban areas, rural areas have higher cancer death rates. This difference in mortality is growing wider over time. In these instances, new cutting-edge therapies are not enough.”

The fact that this research is fairly recent, done within the last few years, also underlines how important it is for patients to speak up.  If a physician doesn’t ask you questions but you have something in your cancer treatment regime that is overly burdensome (traveling for treatments for instance), taking charge and using your patient voice to advocate for better care is a must.  This is true in the cancer treatment space as well as the cancer survivorship space.  Sometimes, a better solution isn’t possible…but we can always ask!

Read more of this very interesting article here.

Cancer Experience Among Emerging Adults Research Study

cancer in emerging adults

As someone who has been diagnosed with cancer, you are invited to participate in a survey-based research study about the experience of individuals diagnosed with cancer between the ages of 18 and 29. This study is being completed to better understand the experience of young adults diagnosed with cancer in the hopes that one day, there will be improvements in the care provided to individuals in this age range. Your valuable input would greatly help us with this research and potentially help improve the experiences of individuals like you diagnosed with cancer in the future.

You are eligible to participate in this study if you received a cancer diagnosis between the ages of 18 and 29 and have completed some form of treatment (including, but not limited to chemotherapy, radiation, surgery, etc.) in the last 5 years. The survey should take less than 20 minutes to complete.

Should you choose to participate, your answers will be kept confidential and will never be linked directly to you. If you have research-related questions, please contact Mikaila Hudson at hudsonk15@students.ecu.edu or Dr. Natalia Sira, PhD, MD at siran@ecu.edu or 252-328-5544. Please contact the Office for Human Reseach Integrity (OHRI) at 252-744-2914 for questions about your rights as a research participant. Thank you for your valuable input!

 

Student Loan Deferment for Active Cancer Treatment Act

student loan deferment for young adult cancer survivors

Critical Mass, an organization that we here at Lacuna Loft absolutely love, has helped introduce a bill that would amend the Higher Education Act of 1965 to allow for the deferment of certain student loans during a period in which a borrower is receiving treatment for cancer.  Critical Mass is The Young Adult Cancer Alliance, the full-time federal advocacy arm of the entire adolescent and young adult cancer community.  Their mission is to advance policies that will transform the United States cancer care and delivery system to better serve adolescent and young adult patients and survivors.

From Kate Houghton, CEO of Critical Mass, “This is the Alliance’s first piece of legislation that specifically addresses a barrier young adult cancer patients are facing as they fight to survive their treatment. We need full engagement from the AYA community if we are going to cut through the noise that is currently surrounding Capitol Hill. This piece of legislation isn’t just a small fix on a big problem, it is the start of substantive change and more importantly recognition that young people can and do get cancer. Let’s show Capitol Hill what a critical mass really looks like!”

Your voice is needed!  Tweet about it, talk about it, facebook post about it, write a letter to Congress about it, use your voice!  Tell your student loan story and help pass this important legislation for future young adult cancer survivors!

You can learn more here.  Click here for a draft email to send to your email list.