Looking For Support And Medical Information Through COVID-19?

stack of papers

Over the last month, a group of patient advocacy organizations, patient experts, and healthcare professionals have come together with the mission to share COVID-19 related resources and information for adolescents and young adult cancer patients, survivors, and healthcare professionals who work with this unique population.  Finding credible resources and information for adolescent and young adult cancer patients and survivors during the COVID-19 crisis can be difficult.  There is just so much out there right now!

The website this coalition developed now provides a listing of resources and programs that are provided by leading patient advocacy groups specializing in adolescents and young adults affected by cancer.

If you’re looking for programs available during the social distancing happening during COVID or if you’re looking for information specific to your diagnosis or treatment (or the diagnosis/treatment of your patients), look no further than covidayacancer.org!

If you know of programs that aren’t on the list, let us know!  The site will be continually updated both on the patient resources side and the provider resources side.  Life is changing day by day and the patient and provider resources and support are changing too.  We are all stronger together and this coalition is there for you the entire way!

Young Adults Cancer Care Interview Study

kaiser and dana farber poster

Lacuna Loft loves sharing research opportunities with you so today we’re passing along a fabulous study being done between Dana-Farber Cancer Institute/Harvard Cancer Center and Kaiser Permanente to learn from patients and family members about the care that young adults (ages 18-39) with cancer receive.

Learn.  Their goal is to evaluate and improve cancer care for future young cancer patients. They especially want to understand what is most important to patients when cancer treatment has not been effective. Research shows that many young adults think about this situation, even when their treatment is going well.

Improve care. Research involving this phase of a patient’s journey with cancer is currently lacking, so they believe that together, we have an opportunity to explore and improve the care that patients receive.

If you would like more information about the study and to find out if you’re eligible to participate, please contact the study project manager, Lauren Fisher at 617-632-6201 or Lauren_Fisher@dfci.harvard.edu.

1. Study participation includes a one-time telephone interview that lasts between 30-60 minutes.

2. The interviewer will ask you open-ended questions about:
– Plans for care
– Important qualities of care
– Priorities for care

3. You’ll receive a $25.00 Amazon.com gift card as a token of their immense appreciation for your participation.

Your information will remain confidential and no one will be aware of your participation except Dana Farber study staff.

You Can Write Write Write With Us!

writing in notebook

I am so excited to announce that we have not one, but two versions of the Unspoken Ink: Young Adult Cancer Online Creative Writing Workshop you can now sign up for!

The Spring Session of Unspoken Ink is starting on Tuesday, April 7th and going for 8 weeks via video chat!  It will meet every Tuesday from 5-7 pm PT / 7-9 pm CT / 8-10 pm ET and overlaps a little with the current session of the program.  On top of that, next Thursday, specifically for AYA Awareness Week, Lacuna Loft is hosting an online Open Write Night, aka Unorthodox Ink, which is a one night version of our Unspoken Ink workshop!

Learn more and sign up for both programs here!

AYA Cancer Awareness Week Is Next Week!

aya week logo

Next week, April 6-10, is Adolescent and Young Adult Cancer Awareness Week!  Along with a coalition of nonprofit organizations focused on AYA cancer, Lacuna Loft is excited to help bring attention to AYA Cancer, share common misconceptions about AYA’s experiences, and present opportunities for young adult cancer patients, survivors, and caregivers to engage in online programming specifically for you!

All week long there will be graphics and social posts for you to share and a variety of online meet-ups, hangouts, opportunities for movement, writing workshops, and more to join.  (Lacuna Loft is offering an Open Write Night which you can already sign up for here!)

Coalition members include the Ulman Foundation, Cook Children’s, Dana Farber Cancer Institute, the Dear Jack Foundation, Elephants and Tea, Epic Experience, the Expect Miracles Foundation, First Descents, the Fort Worth AYA Oncology Coalition, Lacuna Loft, Oregon Health & Science University, the Send It Foundation, the Steven G. AYA Cancer Research Fund, Stupid Cancer, Teen Cancer America, True North Treks, and the Young Survival Coalition.

Share the love and get involved next week!

Travel Scholarships To Cancer And Careers In NYC

people sitting at event

Cancer and Careers has travel scholarships available for patients, survivors and healthcare professionals to attend their 10th annual National Conference on Work & Cancer in NYC on June 19, 2020.

This free, daylong event explores the complexities of balancing treatment and recovery with employment and is open to patients, survivors, caregivers, healthcare professionals, employers/HR professionals, and anyone else touched by cancer.

Don’t miss this opportunity to connect with hundreds of other attendees while learning about balancing cancer and employment!

Session topics include:
Disclosure & privacy
Working through treatment
Legal issues
Career change
Managing stress
…and more!

Applications are accepted and scholarships awarded on a rolling basis.

To learn more go here.

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.

Record Your Important Health Conversations With Abridge

Lacuna Loft is always on the lookout for resources, tools, and other organizations who are helping the young adult cancer community.  We like partnering with them and we LOVE sharing them with you!  Today, I’m super excited to share a great new app that was recently released by Abridge.

Their app lets you record a conversation with your doctor, then it transcribes the verbal conversation into text, and picks out the really important parts.  You can easily tap on any medical moment to replay that specific part of the audio, so you can quickly get to the part you want to relisten to. This makes it so you can easily go back to confirm details you missed, or share the conversation with someone who wasn’t able to be there with you. Plus, the app maintains your privacy and never sells your data! The info you record is for your eyes only (or for whoever you specifically share it with) to better stay on top of all of those details you get at a doctor’s visit.

Our CEO, Mallory, and one of our program participants, Megs, recently tried out the app and are sharing their thoughts with us today!  Plus, you can scroll to the bottom of this post to see an easy gif describing the app!

Megs:

I’m excited to share my experience with this new cancer app called Abridge. The app helps patients and their caregivers record their health conversations with healthcare providers. It then takes those verbal conversations, transcribes them, and picks out the really important parts.

It was easy to register. More importantly, it was super easy to use.

I used it for my appointment with my palliative care doctor. I simply asked my nurse and then doctor if I could record our discussion. I pulled up the app and hit the record button. BOOM!

You can pause it and then keep recording until you’re completely done with the appointment. Once you hit the done button, you can save it and input a title for the recording. The app will work its magic and gather the important insights from the conversations with your healthcare providers.

Then it produces a transcription of every word spoken highlighting important keywords. The type is clear. It breaks down the conversation and timestamps it.

From there, you can share it with your family and anyone else who has downloaded the app. You can write a message, which is optional, input their email address and the app sends the message. The receiver of the message will see your personal message and then directions to download the app and register. Once registered, they can hit play and listen to your recording.

I’m impressed with this app. I find it a necessary tool for every doctor appointment. We’re often hit with so much information when talking with our doctors that we can miss other key information. This app captures every word. It allows us to fully process what is said in each visit afterward.

I highly recommend this app to every cancer patient and their caregivers. It will take the pressure off trying to take notes during the appointment so you can be fully present in the moment.

Mallory:

I tried out the Abridge app at an appointment with my OBGYN.  I was able to easily start the recording with a simple press of a button and it picked up both my own audio and that of my physician.  The app made it really easy to go back and look at what my doctor had suggested…my appointment was later in the afternoon and my attention span isn’t always as good after lunch. 😉  I was also able to email a link to the recording to my husband who wasn’t able to go with me.  The app made sharing my appointment’s transcription and audio very straight forward.

Later in the week, I actually used the app again to record my half of a phone conversation with another doctor, one taking care of a family member of mine.  I sometimes get off the phone with her and realize that I remember more of my own questions than I do her responses.  While the app could only pick up my audio, I basically repeated back to her everything she suggested so the app recording could pick it up (and so I could go back and look at it later!).  In the call, the dosage of both medications my family member needs was being changed,  as well as how often to take them.  Later in the afternoon, I realized that I couldn’t remember which new instructions belonged to which medication.  I was able to readily go into Abridge and check both the audio and the transcription to safely check what the physician had told me.  It saved me a call to the doctor’s office, because we all know how long that turn around time could be, and it gave me peace of mind right away.

I’d highly recommend this app.  It’s easy, right there on your smartphone, and takes all of the guesswork out of what details I could recall after an important health conversation with my doctor!

And that’s it!  Two recommendations for a great new tool to help you take better charge of your own healthcare.  Download the app today and let us know how you’re finding it!

Support The Metastatic Breast Cancer Access To Care Act

capitol hill

Our friends over at the Young Survival Coalition have just shared this great, legislative advocacy opportunity with us and we couldn’t wait to share it with you!

From now through September 9, you have an important opportunity to make your voice count!   The Metastatic Breast Cancer Access to Care Act is an important legislative priority of the National Breast Cancer Coalition that concerns Medicare and Social Security eligibility for metastatic breast cancer patients.

If passed, HR 2178/S 1374 would waive the 24-month waiting period for Medicare eligibility and the 5-month waiting period for Social Security Disability Insurance benefits.

During August, Congress is on a break, so it’s a great time to reach out.  You are your own best advocate, and this is an important opportunity to make a difference!

Take action today!

What Is Your Elephant?

elephants and tea logo

Have you heard about the new adolescent and young adult cancer focused magazine?  Elephants and Tea is the only magazine written for and by adolescent and young adult (AYA) cancer patients, survivors, and caregivers telling their story in their own words.  Cancer is the Elephant in the room.  Tea is the relief the magazine will provide.

Elephants and Tea’s mission is to help AYA patients, survivors, and caregivers experience relief through self-expression, inspire others during their cancer journey, and connect with supportive organizations across the nation.

Cool right?!  Another place to get great, young adult cancer content whenever you need it!  Check out their online magazine today!  (And when you subscribe, you can also sign up for the print version! woot!)

Become An Empowered Survivor Or Advocate At A Triage Cancer Conference!

triage cancer conferences

Lacuna Loft is happy to be a sponsor of the Triage Cancer Conference series! The Triage Cancer Conferences provide individuals diagnosed with cancer, caregivers, advocates, and oncology healthcare professionals, with valuable information about understanding your health insurance options, navigating employment issues, managing finances, and more. Register for FREE here!  2019 Conferences will be in Chicago, IL, Chapel Hill, NC, & Houston, TX – travel grants are available!

Who should attend?

Individuals diagnosed with cancer, caregivers, health care professionals, & advocates will learn about:
– Understanding health insurance, picking a health insurance plan, and appealing denials
– Accessing clinical trials
– How to work through treatment or take time off
– Applying for disability insurance
– Estate planning and other important documents
– Managing medical bills, finances, and getting financial help
– Becoming an empowered patient and advocate
– Dealing with how to grow after trauma

Become an empowered survivor or advocate today by attending a Triage Cancer Conference!