As the coronavirus continues its spread, The Leukemia & Lymphoma Society (LLS) has a vital role to play in ensuring our government takes every step necessary to protect cancer patients. With that in mind, we’re sharing with our community what LLS has been doing to make sure the unique needs of blood cancer patients are being heard by the government at this unprecedented time.
First, some background: LLS’s Office of Public Policy is focused on influencing the laws, regulations and rules – at all levels of government – that affect cancer patients. The team, operating in Washington, D.C. and across the country, includes experts in lobbying, grassroots advocacy, communications and policy research. Their goal is to advance public policies that promise the safe and speedy development and approval of new cancer treatments, as well as policies that break down the barriers to care that patients often encounter. COVID-19 hasn’t changed this focus at all. In fact, it makes our public policy work even more critical, since cancer patients and survivors are vulnerable to serious illness if infected with this new disease.
LLS is hearing from patients who are concerned about being able to pay household bills, like their mortgage payments, because they’ve been furloughed without pay and are facing potential job loss as a result of the pandemic. In addition, patients are facing Medicaid barriers – and this is impacting access to the care they need. “I need those benefits now. I’ve got leukemia and polycythemia vera. I won’t survive another 15 months unless I can find a way to pay for the medication that could save my life. This is critical. We need help now,” writes a patient.
LLS is committed to putting patients and their families first during this time. You might have seen the news that Congress passed recently three pieces of coronavirus legislation, totaling more than $2 trillion. As federal lawmakers began formulating the coronavirus relief packages last month, LLS played a lead role organizing 29 national patient advocacy organizations to deliver a letter to Congressional leadership urging swift adoption of the Families First Coronavirus Response Act.
Now law, this measure takes steps to facilitate social distancing and provide no-cost COVID-19 testing, among other things. Currently, Congress is in recess – most lawmakers have left Washington and returned to their districts – but their work and ours isn’t close to being done.
We continue to push for even more from Congress as well as the White House. Just this week, LLS organized 33 patient organizations to send a letter to Congressional leaders urging them to adopt key reforms in their fourth round of COVID-19 legislation. Additionally, we launched an effort to reach governors in all 50 states, asking them to take action where they have authority. More than 22 national patient organizations are partnering with us in this coordinated campaign, along with additional state and local organizations.
Together with our partners, we are advocating for policies that we believe are critical to protecting both public health and the interests of patients, including:
Expanding Medicaid eligibility and funding so more low-income people can access healthcare during this critical time
Removing Medicaid barriers that prevent people from getting the care they need
Providing more opportunities for telemedicine to increase social distancing and reduce the risk of transmission of the novel coronavirus
Relaxing restrictions on drug refills so patients can ensure adequate supplies and reduce their travel to pharmacies
Opening a special enrollment period on Healthcare.gov so anyone who needs to can buy health insurance right now, ensuring affordable access to healthcare
Ensuring access to COVID-19 treatment, testing and vaccines (when available) for all patients who need it
Protecting patients from surprise medical bills that might come from treatment and testing for COVID-19
Providing additional funding for community health centers to address this crisis
Thankfully, LLS works with a vibrant grassroots advocacy community, comprised of many passionate volunteer advocates who are helping to elevate the voices of cancer patients during the pandemic. So far, they’ve sent more than 6,800 letters to Congress urging lawmakers to adopt policies like those described above – and the number of letters grows every day.
We invite you to join us as we continue to take action to protect cancer patients during the coronavirus crisis and beyond. We promise to keep standing up for our community and keep you up-to-date on how our shared efforts help to move the needle.
As all of us continue to adjust to a new normal amid the coronavirus disease (COVID-19) pandemic, it’s essential to practice good self-care and prioritize our health. Margaret Martin, RD, MS, LDN, CDE, a registered dietitian at The Leukemia & Lymphoma Society (LLS), highlights the importance of staying well-nourished through nutrition. “Your body’s ability to fight infection and disease depends on your immune system. Although there are no special foods or dietary supplements that can prevent COVID-19, healthy living strategies can help support your immune system now and all year long,” she says.
Margaret answers below some frequently asked questions from patients and caregivers on how to eat healthy during this time.
LLS is here for you. We encourage blood cancer patients, survivors, caregivers and families to contact our Information Specialists for free, one-on-one support at 800-955-4572 or by email or chat here.
Q. Can I catch the virus from food?
COVID-19 is not a foodborne illness. The U.S. Department of Agriculture (USDA) reports, “Currently, there is no evidence of food or food packaging being associated with transmission of COVID-19. Like other viruses, it is possible that the virus that causes COVID-19 can survive on surfaces or objects. For that reason, it is critical to follow the four key steps of food safety — clean, separate, cook, and chill.”
Be sure to wash your hands thoroughly before and after handling food per the U.S. Centers for Disease Control and Prevention (CDC) guidelines. Food safety rules also apply to take-out and delivery foods, which should be eaten within two hours of cooking, and leftovers must be stored safely and reheated to a safe temperature. For more information on food safety for blood cancer patients, view LLS’s Food and Nutrition Facts.
Q. How can I make meal times feel less lonely?
Sharing a meal virtually with loved ones and friends is a great way to boost spirits and stay in touch. Schedule video chats over meal times. Consider hosting a virtual potluck where everyone shares their favorite dishes or recipes.
Many cancer patients who have undergone treatment understand what’s it’s like to have to practice social distancing and the importance of isolating themselves to safeguard their compromised immune system. And now amid the coronavirus disease (COVID-19) pandemic, many of us are doing the same to protect our own health as well as the health of our loved-ones and our communities.
Those who continue to work throughout this crisis, might be dealing with new challenges. For some, remote work might be nothing new, but for others, not only are they adjusting to working from home, but children and other family members who reside with them are likely home too. Those who weren’t working before or are no longer working due to the coronavirus disease (COVID-19) pandemic, are adjusting to having other members of the household home with them around the clock. While going out to dinner or the movies, or even a trip to the park are a temporary thing of the past, there are ways and resources that can help us all cope with the new normal.
The Centers for Disease Control and Prevention (CDC) has compiled some helpful tips to keep children healthy and active during this time. And The New York Times shares stories from readers about what it’s like to almost never be alone at home.
How one cancer survivor is making it work
While you might feel isolated and at times wonder how you are going to make it all work, know that you are not alone – many others are echoing the same thoughts and same emotions. We spoke to working dad and cancer survivor, Scott Peterson of Harrisburg, N.C. who shares how he and his family are handling work, home and parenting obligations. He hopes to provide some insight or inspiration for others facing similar circumstances.
Scott was diagnosed with diffuse large B-cell lymphoma in 2006. Ever since an LLS-funded treatment saved his life, he continues to fight cancer in various ways, including raising hundreds of thousands of dollars through LLS’s fundraising campaigns like Man & Woman of the Year and Team In Training.
Scott is an experienced marketing professional has a long history of success in the content development, sports, fundraising and events industries. Now that his work schedule has pivoted to a full-time work-from-home-structure, the busy father of two young daughters, 7-year-old Harper and 5-year-old Nora, who are newly homebound says, “There’s been some adjustments for sure, but there’s nothing more important to me than my family and helping find ways to end cancer.”
How have you developed a schedule for educational priorities with your children?
We have been working with our daughters’ amazing teachers to help set a schedule and priorities to keep their education moving and a top priority. What’s been beneficial is, we have incorporated more life skills into their day to day learning. My wife is very creative and has had a lot of fun, creative projects to challenge them and I help as much as I can.
Have you been able to set a flexible work from home schedule?
We have worked with each team member at my company to figure out how they can best work from home, continue to take care of our stakeholders and we have taken the extra time to consider everyone’s new additional parenting / teaching priorities. It’s important to know that every single person has a very unique situation.
How are you balancing your cancer treatment routine?
I am thankfully not currently in treatment right now and will be 13 years in remission in May of this year! But I am still fearful of my immune system and what this virus could do if I were to contract it, so we are taking every precaution possible. My advice to cancer patients balancing treatment and parenting, is try your very best to balance both, even if it means bringing your children to additional appointments. This is a temporary change in schedule and cancer will not wait for COVID-19 to subside.
How are you keeping your children entertained and while at home?
Thankfully, my wife Jaci, who was temporarily laid off due to the current economic state, has taken on an incredible teaching role and I am able to take breaks throughout the day to help with learning, entertainment, etc. There are so many amazing learning based apps currently that they are able to have fun and learn at the same time. We are also doing a lot of craft projects and working on house projects that the girls can help with.
How are you managing self-care and taking time for yourself during this difficult climate?
I have made sure to take time for more walks, yoga and our family participates in a digital fitness program that provides some structure and goals to work towards. We have been very diligent about making sure we all are staying fit and mixing up our day the best we can. This part of our daily routine benefits all of us. As a cancer survivor, my health is a nonnegotiable in terms of prioritizing.
What other words of encouragement would you share with other cancer survivors and parents right now?
Take care of your health FIRST. The financial stresses and work challenges will all return and are far less important than the mental and physical toll something like this can take on you and your family. Cancer brings along more mental uncertainty and stress on a daily basis than most people anyway so it is important to take time for you and your family. I would also recommend listening to the CDC and WHO and stay at home, stay isolated but use today’s technology to stay connected, stay involved and stay social. Most importantly, stay positive!
The Leukemia & Lymphoma Society continues to provide support to blood cancer patients, their families and caregivers. Our Information Specialists can be reached by phone at 800-955-4572 by email or chat by clicking here.
