Hurricane Harvey Disaster - Grant for Blood Cancer Patients

Patient Access Manager, Dawn Guerrero, speaks about recent events in Texas.

The past two weeks have been especially tough for Texans. Hurricane Harvey has left many of our neighbors without a home or unable to return home.  I’ve seen reports of families stuck on the second floor of their homes, or those that have lost their normal transportation because of flooding.  When we add the pain and trauma of battling blood cancer, I can only imagine the stresses of trying to get to a doctor’s appointment or losing that life supporting medicine.  I’m proud to let you know that LLS is here for you.  This announcement was released today:

The Leukemia & Lymphoma Society (LLS) joins the nation and the world in concern for those affected by the flooding caused by Hurricane Harvey, and we extend our condolences to the families of those lost in this natural disaster. We recognize that many of the individuals and families impacted in Texas and Louisiana are blood cancer patients and their families, and that many have been displaced from their homes, are unable to reach their physician or treatment center, or have lost their medications due to the flooding.

In response to the Hurricane Harvey disaster, LLS, as a patients first organization, is committing up to $1 million to provide direct support to blood cancer patients in impacted communities to help with travel to treatment centers and doctor appointments, to replace medications lost due to storm damage, and other needs directly related to the hurricane.  Eligible blood cancer patients who live in declared disaster areas will receive $500. Patients must be in active treatment, scheduled to begin treatment or are being monitored by their doctor.

If you are or know someone that was affected, please visit this site to see if you qualify for this new grant:  http://www.lls.org/hurricane-harvey-relief

The application process is online and is now active.  Additionally, please encourage patients and families to call our Blood Cancer Information Specialists at 800-955-4572 for information and support.

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Dawn Guerrero is the Patient Access Manager of the North Texas Chapter of The Leukemia & Lymphoma Society and author of this monthly blog series.  She has a Masters in Business Administration and has experience working with varied aspects of the healthcare industry. 

Contact Dawn:

Dawn.Guerrero@lls.org 
972-996-5905

New Patient Services Access Manager

We are excited to introduce the new North Texas Patient Access Manager. Dawn Guerrero comes to LLS after recently completing her Masters in Business Administration degree at the local Argosy University campus here in Dallas. She has experience with multiple non profits including the Red Cross in Virginia.  Dawn will be working directly with all of our patients. She took a few minutes to answer a few questions so we can all meet her.

1. Tell us about your nonprofit background.  
For seven years I worked with the American Red Cross in Virginia running the regional stem cell donor program.  There we educated and recruited donors and then facilitated the donation process when a match was found.

2. What attracted you to The Leukemia & Lymphoma Society?

When I saw the opening for Patient Access Manager, I knew it was the perfect fit for my skills and interests.  Now I can impact more lives by supporting patients directly.  
 
3. Tell us about your history in working with patients and the cancer industry.

My past experience was on the donor side of the transplant world.  My center facilitated both bone marrow transplants and peripheral blood cell transplants.  My center was one of the first centers to perform an allogeneic PBSC donation through the National Marrow Donor Program.
4. What are you most looking forward to with interacting with the North Texas Community?
Impacting lives and making sure the services that are needed in the community are readily available. 

5. What do you want people to know about you?
I grew up an avid soccer player and even played on a German women’s professional team when I was younger.  I continue my obsession with sports by now watching soccer, football, hockey and tennis as a fan. After tearing my ACL I decided to switch to a tamer sport, tennis, in order to stay active.

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Dawn Guerrero is the Patient Access Manager of the North Texas Chapter of The Leukemia & Lymphoma Society and author of this monthly blog series.  She has a Masters in Business Administration and has experience working with varied aspects of the healthcare industry. 

Contact Dawn:

Dawn.Guerrero@lls.org 
972-996-5905

Susan Lange Pay-it-Forward Travel Assistance Program: Now Accepting Applications

I am delighted to share with you today that the Susan Lang Pay-it-Forward Patient Travel Assistance Program is now open and accepting applications!  We here at LLS are so proud of all that we do, but also know that there is always more to be done! We strive to improve and continue to do so by going directly to you and asking how we can better serve your needs.  Well, you have spoken loud and clear.   Increased financial support and options for people who are uninsured were two things that we heard over and over again.  This program addresses both by providing assistance to all blood cancer survivors, regardless of their insurance status, who demonstrate financial need.  Please see the details below to learn more.  I am always happy to discuss this program, and all that LLS has to offer, any time!

Patient Eligibility

      Applicants (patients) must be US citizens or permanent residents which is verified by applicant’s physical address; and

·     Applicants must have a confirmed diagnosis of blood cancer; and

·     Applicants may be insured or uninsured; and

·     Applicants must meet financial eligibility criteria defined as an annual income at or below 500% of the Federal Poverty Level (FPL)  

A one-time grant of $500 is available for qualified patients per year:

Awards are limited to one per patient, per year; and

·     Awards are based upon a first-come first-serve basis; and

·     The program will be offered for as long as funding is available

How to Apply

Patients can apply via the online portal at www.lls.org/travel or by calling our toll free number: 844-565-2269.

Approved Travel Expenses: ground transportation, tolls, gas, parking, car rental, air transportation, lodging, and ambulance services.

Expenses NOT Covered: food, automotive parts, repair, supplies, auto dealers, travel agencies, baggage fees, and international travel.

Please feel free to contact me directly should you have any questions regarding the Susan Lang Pay-it-Forward Patient Travel Assistance program .  

Thank you for your continued support!

Your friend, 

Seetha
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Seetha Modi is the Patient Access Manager of the North Texas Chapter of The Leukemia & Lymphoma Society and author of this monthly blog series.  She has an Masters in Public Health and has experience working with varied aspects of the healthcare industry, including hospitals, the CDC and other health-related nonprofit organizations.

Contact Seetha:

Seetha.Modi@lls.org

(972) 996-5905

Patient Access Manager: National Social Worker Month

March is National Social Worker Month and we salute the more than 25,000 social workers in the North Texas community.  This year's theme  "Forging Solutions out of Challenges" perfectly encapsulates the work that these individuals do for The Leukemia & Lymphoma Society (LLS) and our patients on a daily basis.  Social workers are critical to a patient who is looking for help and guidance while trying to juggle a cancer diagnosis, arduous treatment regimen, financial and legal concerns, just to name a few.

While most people think of social workers as support during treatment, they are truly a part of the entire cancer journey.  This is why LLS is dedicated to help these dedicated individuals stay up to date on the latest treatments, therapies and support services for these patients.  LLS offers 4.5 FREE CEUs to social workers as part of the Blood Cancer Conference & Cancer Expo.

We work closely with the social workers and case management teams to ensure that LLS resources are available to all who can benefit from our services.  Every day there are men and women right here in our community who go above and beyond the call of duty to help families during their blood cancer journey.  

In honor of national social work month, I invite you to thank a social worker who has touched your life.  My heartfelt gratitude to all the providers who are dedicated to serving our blood cancer community every day! 

Your friend, 

Seetha
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Seetha Modi is the Patient Access Manager of the North Texas Chapter of The Leukemia & Lymphoma Society and author of this monthly blog series.  She has an Masters in Public Health and has experience working with varied aspects of the healthcare industry, including hospitals, the CDC and other health-related nonprofit organizations.

Contact Seetha:

Seetha.Modi@lls.org

(972) 996-5905

Patient Access Manager: World Cancer Day

Today is World Cancer Day, a day when humanity rallies together across borders and oceans to unite in the fight against cancer.  The Leukemia & Lymphoma Society (LLS) is leading the way.  For us, World Cancer Day is a day of action. We act because adequate funding for research CAN put cures within reach. 

The Cancer Moonshot Initiative officially just kicked off on Monday! This historic project aims to end these diseases once and for all.  Just as Americans came together to put astronauts on the moon, we must be bold to push beyond the boundaries that have stood in the way of cures.

If you want to be part of this effort, the first step is telling your story – to make sure our leaders in Washington understand the many burdens of cancer: emotional, financial, spiritual, and physical. Join the moonshotmission to find cancer cures! Tell Washington how cancer has touched your life and your loved ones.  By taking action today, you're standing with the millions of patients, families, and researchers in the search for cures and treatments to alleviate the suffering cancer brings upon us. Cancer is personal, and with your help, we can advocate for the changes that will improve the lives of the people we hold most dear.

LLS is pioneering cutting-edge precision therapies.  The science of immunotherapies presents a paradigm shift that has forever changed the landscape of cancer care.  Using a patient’s own immune system to kill cancer, providers can work with a patient’s genetics and lifestyle to develop a personalized therapeutic plan.  You can learn more about how LLS identifies and supports promising researchers here:https://www.youtube.com/watch?v=iU8iruhryTs

Today, we celebrate the researchers, providers, survivors, caregivers, and supporters in our international oncology community.  We here at LLS recognize that there is a shared experience and sense of solidarity among everyone affected by cancer.  On September 9 and 10^th, LLS North Texas will be hosting a Cancer Expo to highlight health, wellness, and support resources for everyone in our community.  Please save the date and plan to attend! More information on vendors and schedule coming soon! 

Your friend,

Seetha

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Seetha Modi is the Patient Access Manager of the North Texas Chapter of The Leukemia & Lymphoma Society and author of this monthly blog series.  She has an Masters in Public Health and has experience working with varied aspects of the healthcare industry, including hospitals, the CDC and other health-related nonprofit organizations.

Contact Seetha:

Seetha.Modi@lls.org

(972) 996-5905

Patient Access Manager: New PCR Testing Financial Assistance

If you have chronic myeloid leukemia (CML), your doctor may order a polymerase chain reaction (PCR) blood test.  This test can find a very small number of CML cells in your blood which can help your doctor know if your CML is under control.   Here is a video that provides more information about this test and how it used: http://www.lls.org/patient-education-videos/chronic-myeloid-leukemia-cml-the-role-of-pcr-testing

The Leukemia & Lymphoma Society is pleased to announce the opening of The LLS PCR Testing Financial Assistance and Awareness Program for patients with CML. Approved patients may receive up to $1,000 of financial assistance for out-of-pocket costs directly related to PCR testing during their enrollment period. As part of the program, enrolled patients will receive support from a program facilitator, who will provide education and address barriers to testing. Acceptance into the program will be first-come first-served and based on financial eligibility.  

To be eligible for PCR Testing Financial Assistance, you must have a chronic myeloid leukemia (CML) diagnosis, be a United States citizen or permanent resident of the U.S. or Puerto Rico and have a household income that is at or below 500 percent of the U.S. federal poverty guidelines as adjusted by the Cost of Living Index (Click here to estimate).  For more information or to apply, please visit the website www.LLS.org/PCR or call 1-877-614-9242. 

Feel free to reach out to me directly if you would like more information about this exciting new initiative.

Your friend,

Seetha

__________________________________________________________________________

Seetha Modi is the Patient Access Manager of the North Texas Chapter of The Leukemia & Lymphoma Society and author of this monthly blog series.  She has an Masters in Public Health and has experience working with varied aspects of the healthcare industry, including hospitals, the CDC and other health-related nonprofit organizations.

Contact Seetha:

Seetha.Modi@lls.org

(972) 996-5905

Patient Access Manager: IWMF Educational Forum

May is an important month of firsts for me.  My first Mother’s Day.  My daughter’s first birthday.  And, my first International Waldenstrom's Macroglobulinemia Foundation (IWMF) Educational Forum!  Every year IWMF brings together the patient, caregiver, and support communities to learn about Waldenstrom’s.  Presentations are given by thought leaders in research and clinical practice, but aimed at a lay audience.  We were lucky enough to host this year’s Forum right here in Grapevine!

The day before the main Forum started, I attended a luncheon with support group leaders.  As a Patient Access Manager, I support the medical, nonprofit, and survivor/caregiver communities.  It was so interesting to talk to these leaders and learn from their experience.  A good majority of those who have now assumed leadership positions in their community actually started in groups as patients or caregivers themselves.  I love stories where people take challenging experiences and channel them into positive change for others.  This group did not disappoint!  They brought tears to my eyes and inspiration to my heart. 

The next three days were the sessions.  The speakers were clearly vetted well, because the caliber of these talks really blew me away.  Seriously-check out this lineup: 2015 Ed Forum Agenda!   I am going to tell you about my favorite two: Dr. Larry Anderson and Dr. Lee Greenberger.  Hey, I never said I wasn’t biased!  I made me proud to see these two LLS rock stars represent us so well. 

LLS sponsored Dr. Anderson’s session: I Need Treatment – First Line Treatments & Side Effects on Friday. Dr. Anderson reviewed diagnosis, first-line treatment options, the benefits of each option, and potential side-effects to consider before deciding on which option is right for you. His case study method highlighted various presentations of the disease and how treatment options vary based on the diagnostic profile. The interactive session let the audience apply the information themselves and showed me the importance of empowering patients.  These types of educational sessions go a long way in promoting patient/caregiver engagement and encouraging them to be their own advocates throughout treatment. 

When he is not educating the masses, seeing patients, or juggling the 13 clinical trials he is involved in, Dr. Anderson also finds time to be an LLS advocate.  This year, he is a Man of the Year candidate.  A special thanks to Dr. Anderson for the many ways he supports our North Texas community!

On Sunday, Dr. Lee Greenberger talked about The Strategic Research Roadmap for WM.  As our missions are so closely intertwined, LLS and IWMF have a long and rich partnership.  This talk was no exception, and served as a precursor to the joint Road Map session for WM that LLS and IWMF will be holding in New York City on May 16^th and 17^th.  I will provide a more detailed review of Dr. Greenberger’s presentation and some takeaways from this planning session in my next blog post.  Stay tuned. . . more to come! 

Your friend,

Seetha 

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Seetha Modi is the Patient Access Manager of the North Texas Chapter of The Leukemia & Lymphoma Society and author of this monthly blog series.  She has an Masters in Public Health and has experience working with varied aspects of the healthcare industry, including hospitals, the CDC and other health-related nonprofit organizations.

Contact Seetha:

Seetha.Modi@lls.org

(972) 996-5905

Patient Access Manager: Shaping Public Policy

Staff from several Texas chapters of The Leukemia & Lymphoma Society
meeting with Senator Ted Cruz during the 2014 Mission Days trip to Washington DC.

I wanted to work for The Leukemia & Lymphoma Society (LLS) because the mission means so much to me: cure blood cancers and improve quality of life for those affected by them.  Just last year, LLS invested $79.8 million in research to find a cure. My world focuses primarily on the second half of our mission. I work every day with healthcare providers, community partners, patients, and their families to improve the quality of those lives touched by blood cancer.  However, what you may not know is that my role falls under the office of public policy.  Advocacy and the political landscape is a critical part of ensuring a good quality of life for patients during and after their treatment.  While every person and story are unique, there are systemic issues that affect all of them. 

The LLS Office of Public Policy works to create a system that supports and guides people through their cancer journeys.  Our work in this area includes ensuring patients have an adequate network of providers and services, protecting patients from high out-of-pocket costs, preserving Medicare Part D provisions for prescription drug coverage, working with the FDA and other key stakeholders to ensure timely access to life-saving drugs, and ensuring that the voice of blood cancer patients is well-represented throughout the legislative process. 

LLS recently testified before a committee in the US House of Representatives on the importance of providing meaningful insurance coverage to people with pre-existing conditions.  Other accomplishments include eliminating Oregon’s two year waiting period for transplants for previously uninsured patients in the state health exchange, and leading coalitions in six states to pass oral parity bills that ensure patients taking oral medicines aren’t required to pay more than those getting physician-administered therapies. 

If removing barriers to equitable access and creating a strong system of support for blood cancer patients matters to you, then you should join our advocacy network.  So many great accomplishments have been made one email or phone call at a time.  Letting your representatives know that you support the rights of blood cancer patients has never been easier.  Sign up for our advocacy network here today: http://advocacy.lls.org/signup_page/signup  To see more ways LLS is taking action today check out our legislative action center: http://advocacy.lls.org/p/dia/action/public/

Together we can, are, and will continue to, make a difference. 

Your advocate,

Seetha 

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Seetha Modi is the Patient Access Manager of the North Texas Chapter of The Leukemia & Lymphoma Society and author of this monthly blog series.  She has an Masters in Public Health and has experience working with varied aspects of the healthcare industry, including hospitals, the CDC and other health-related nonprofit organizations.

Contact Seetha:

Seetha.Modi@lls.org

(972) 996-5905

Patient Access Manager: Myeloma Awareness Month

Hello again, 

As I am sure you have heard, March is Myeloma Awareness Month.  Right now The Leukemia & Lymphoma Society (LLS) has more than $38.5 million invested into the best and brightest researchers working specifically on finding cures and treatments for myeloma.  LLS invested $8 million of that just in the last year.  We are dedicated to the myeloma patients (and their families) that we serve.

Myeloma was a big topic at the annual American Society of Hematology (ASH) meeting recently.  Right now there are a number of clinical trials underway for initial therapy or for relapsed myeloma.  Three specific treatments that involve monoclonal antibodies (elotuzumab, daratumumab, and SAR650984) are thought to be game changers in the treatment landscape.  It's definitely an exciting time to be part of the cancer community!

If you would like to attend a free education program on myeloma from LLS, we have one coming up next month that is focused on managing the side effects of these myeloma drugs.  Below is the information on the program:

Living with Myeloma - Managing Side Effects and Quality of Life
Date: April 8, 2015
Time: 1:00 - 2:30 p.m. ET
Location: Telephone/web
Register: Online by clicking here or by phone (855) 676-7723
Topics:  Current and emerging treatments for myeloma
              Monitoring disease progression
              Managing symptoms and treatment-related side effects
              Discussing quality-of-life issues with your healthcare team
Presenter:  Sagar Lonial, MD, FACP
                  Professor and Executive Vice Chair
                  Department of Hematology and Medical Oncology
                  Winship Cancer Institute
                  Emery University School of Medicine

I hope that you will join us for this free educational program.  If you can't make it but would like to discuss any of these topics, please reach out to me directly.  

I look forward to chatting with you!

Seetha

_______________________________________________________________________________

Seetha Modi is the Patient Access Manager of the North Texas Chapter of The Leukemia & Lymphoma Society and author of this monthly blog series.  She has an Masters in Public Health and has experience working with varied aspects of the healthcare industry, including hospitals, the CDC and other health-related nonprofit organizations.

Contact Seetha:

Seetha.Modi@lls.org

(972) 996-5905

Patient Access Manager: Meet Seetha Modi

“The two most important days of your life are the day you’re born, and the day you figure out why.”  

I remember this quote hanging on the wall in my high school library.  I would stare at it often as it was right by the spot where I spent my free study periods.  At seventeen, it didn't mean much to me.  First of all, I obviously already had everything figured out.  The only thing that confused me was why all the adults did not appreciate my infinite wisdom.  Secondly, navigating high school life and preparing for college was already a full-time job that didn't leave much extra time for reflecting on the meaning of life.  It is only now, starting my new full-time job as Access Manager at The Leukemia & Lymphoma Society (LLS), that I am thinking back to those days, that quote, and how I found my new purpose. 

My journey to LLS started in 2012.  The holiday season had begun, but we didn’t know that the unwelcome presence of blood cancer had quietly invaded our home.  Three days before Christmas, our lives changed.  As other families toasted with glasses of port, we were scheduling a port placement procedure.  Like a string of lights, a series of events began.  Each dependent on the other to move forward.  Waiting. Hurrying. A reluctant patient and eager caregivers doing our best to navigate new roles we never wanted.  Fortunately, our journey ended in remission.  Unfortunately, LLS was not a part of it. 

A few of my friends were part of Team in Training (TNT).  I went to their fundraisers, supported them on their runs, and never recognized TNT as an LLS campaign.  I first heard of LLS as an organization when I was talking to a friend about my experience.  I Googled LLS after our lunch and discovered the wealth of resources LLS offers to support patients and their families.  Wow! If only I had known. . . 

That if is what gives me my purpose today.  People need to know about these services when it matters, and sharing that message in our community makes me feel that my work matters.  I am the voice of blood cancer patients in the North Texas community.  To the facility administrators who don’t know how they can improve blood cancer care: Hear me.  LLS is here for you.  To the legislator trying to make the system better: Hear me.  LLS is here for you.  To the oncology professionals that guide so many through their journeys with care: Hear me.  LLS is here for you.  To those who are fighting for their lives and refuse to let a diagnosis define them: Hear me.  LLS is here for you.  To the friend who wants to help, but doesn’t know what to say or do: Hear me. LLS is here for you.  To the family members sleeping on hospital couches and living off cafeteria food: Hear me.  LLS is here for you.  I am here for you. 

Throughout this blog series, I will highlight some of our most popular services so you can learn more about the ways LLS is here for you.  On a personal note, thank you to the North Texas community for welcoming me with open arms.  I started this job thinking I would be the one supporting you, yet I am the one who is continually inspired by the love, strength, and hope I see every day in all of you. 

Looking forward to meeting you.

Seetha

_______________________________________________________________________________

Seetha Modi is the Patient Access Manager of the North Texas Chapter of The Leukemia & Lymphoma Society and author of this monthly blog series.  She has an Masters in Public Health and has experience working with varied aspects of the healthcare industry, including hospitals, the CDC and other health-related nonprofit organizations.

Contact Seetha:

Seetha.Modi@lls.org

(972) 996-5905

Susan Allen: First Connection

The Leukemia & Lymphoma Society (LLS) offers patients and their families a number of different resources to help during treatment.  One of the most popular programs is called the Patti Robinson Kaufman First Connection Program.  The purpose is to put patients in contact with somebody who has already gone through treatment for the same type of blood cancer.  LLS does its best to match age, gender, diagnosis and treatment options when making a First Connection match.  

Read as Steve Bradbury of Fort Worth talks about his experience using the First Connection Program below.

"In January of 1992 I was diagnosed with Hodgkin’s lymphoma.  I had never heard of this and at 23 years of age I was bulletproof.   I completed three months of chemotherapy and 60 days of radiation, and ten years later I was released from my doctor.  I kept going back for two more years, cancer free.   Then in the fall/winter of 2013 I became ill, pneumonia, cough, and could not kick it. Finally the day before Thanksgiving I went for a CT.  Within ten days I was diagnosed with Hodgkin’s lymphoma again.  I was a little less bullet proof at age 45.   Luckily, I have clients who work in the cancer arena and I was put in contact with The Leukemia & Lymphoma Society. From there I found out about First Connection.

Within a few days of my second treatment I received a call from a man named Jim Omara in Pennsylvania. He had gone through treatments for Hodgkin’s lymphoma twice himself.  This call was a blessing to me.  We spoke like we knew each other for years and email each other monthly now with updates, questions and stories.  I am almost finished with my treatment and the last pet scan showed that the cancer was gone.  Jim has been cancer free for some time and I told him after I first visit, that as soon as I was done with the treatment I would be joining the First Connection to help others.  He really helped me focus on me, my treatment and I hoped I would be able to do the same for others."

Please reach out to me if you are interested in learning more about the First Connection program or would like to get involved.

Your friend, 

Susan

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Susan Allen is the Patient Access Manager of the North Texas Chapter of The Leukemia & Lymphoma Society and author of this monthly blog series.  She is a 22-year Hodgkin's lymphoma survivor, registered nurse and a Certified Nurse Navigator.

Contact Susan:

Susan.Allen@lls.org

(972) 996-5905

Patient Education: Making Informed Choices about Standard Care and Clinical Trials

Hello North Texas,

Clinical Trials can be a mysterious medical term that people don’t really understand.  They are a very important part of medical advancement because they pave the way for new treatments and medications. Come and spend some time with Dr. Robert Collins, an LLS-funded researcher right here in North Texas, who is involved in conducting Clinical Trials at U.T. Southwestern and learn more about the process of finding the next step in treating and curing  cancer.

Your friend, 

Susan

_______________________________________________________________________________

Susan Allen is the Patient Access Manager of the North Texas Chapter of The Leukemia & Lymphoma Society and author of this monthly blog series.  She is a 22-year Hodgkin's lymphoma survivor, registered nurse and a Certified Nurse Navigator.

Contact Susan:
Susan.Allen@lls.org
(972) 996-5905