PEN Blog Archives

Looking back at ASCO 2024

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If you’ve been following PEN on social media, you know that we had a whirlwind of activity in Chicago 5/30-6/3. The American Society for Clinical Oncology (ASCO) annual conference, with more than 45,000 attendees, is more than anything else, a venue for significant results of clinical trials to be reported and – in many cases – celebrated.  

While the therapies being studied may be many years from approval for public use, we can still take hope from the positive results and innovative ideas presented. Here are a few of the exciting news items from ASCO24: 

  • Gene mutations took center stage, as advancements in therapies based on often difficult-to-treat mutations showed great promise. The KRAS gene mutation, in particular, often presents challenges in a variety of cancer types; results presented at ASCO24 show the potential of a continually expanding assortment of KRAS inhibitors. 
  • Cancer vaccines shared the spotlight, with multiple pharmaceutical companies collaborating to move innovation forward quickly. mRNA technology (in the news since 2020 because of the COVID vaccine) has been a subject of oncology research since the 1970s and stands poised to make possible a melanoma vaccine.  
  • Antibody drug conjugates (ADCs) continue to show promise, allowing targeted therapies with fewer side effects and better outcomes. With tremendous success in the already-approved ADCs for breast and lung cancers, studies proceed to learn the impact on other cancer types. 
  • We learned of promising clinical trials that improve on the standard of care in many specific cancer types. An example is a trial that showed using an immunotherapy drug, rather than a chemotherapy, is more effective in certain colorectal cancers than the standard of care. 
  • There is a growing research focus on prevention and understanding the increased cancer risk that factors such as obesity create. 
  • Trials on better testing and early detection yielded some great results, with a DNA blood test that can predict breast cancer recurrence garnering much interest. 
  • Over and over again, we heard the importance of patient involvement and how the patient voice is being incorporated earlier in clinical research. 

For a better understanding of the clinical trials process, read What’s Really the News You Can Use.

A Patient’s Proactive Path to an Acute Myeloid Leukemia Diagnosis

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A Patient’s Proactive Path to an Acute Myeloid Leukemia Diagnosis from Patient Empowerment Network on Vimeo.

Meet Paloma, a 58-year-old acute myeloid leukemia (AML) survivor. After experiencing breathlessness, sore gums, and other symptoms that were initially misdiagnosed, she trusted her instincts and sought further medical support, leading to her AML diagnosis. Discover Paloma’s journey and the vital importance of being proactive and staying [ACT]IVATED in your cancer care.

See More from [ACT]IVATED AML

Related Resources:

Empowered AML Patient: Ask the AML Expert

Empowered AML Patient: Ask the AML Expert 

 How an AML Survivor’s Resilience Saved Her Life

How an AML Survivor’s Resilience Saved Her Life 

 Advice for Acute Myeloid Leukemia Patients Seeking a Clinical Trial

Advice for Acute Myeloid Leukemia Patients Seeking a Clinical Trial 

Transcript:

Being ACTIVATED in your cancer care is critical and also a continuous journey.  My name is Paloma, and I’m eager to share my journey as an acute myeloid leukemia patient in the hopes that it will help other patients and families. AML doesn’t discriminate; it can affect anyone, regardless of lifestyle or healthy eating habits.

I was 58 when I was diagnosed with AML, and my diagnosis was pretty shocking to me. I learned that you really need to trust your instincts when it comes to your health. I felt like something was off with my body, but my initial symptoms were only some breathlessness upon exertion and sore gums. But then additional symptoms started including a dry cough, some flu-like symptoms, and lumps under my armpits. I saw my primary care provider, and she prescribed antibiotics and sent me for a chest x-ray that came back without issues. 

When my breathlessness worsened along with profound fatigue, my doctor then sent me to get an ECG and additional blood tests to help determine what might be wrong. While I was waiting for my test results, my co-workers noticed that I looked thinner with my skin also being paler than usual. This was just the beginning of my AML journey. My blood tests came back with abnormal hemoglobin and blast levels, and my doctor arranged for me to be admitted to a well-regarded cancer center. I was fortunate that it was only 20 miles away but realize that not all cancer patients are this fortunate.

After seeing my AML specialist at the cancer center, he wanted to start my chemotherapy right away to fight the cancer. I was fortunate that I didn’t have issues with my intravenous line for receiving my chemotherapy. But I learned that this can be a common issue for AML patients after I joined an online AML support group. I had my first round of chemotherapy, and my daughter was able to visit me during this time. However, my care team kept monitoring my neutrophils and decided that I needed to start a second round of chemotherapy. It was now during the COVID-19 pandemic, and hospital visitors weren’t allowed.

I counted myself as fortunate that I could still continue with receiving chemotherapy. What would have happened if I’d gotten seriously ill during the early pandemic? I shudder to think that things likely would not have been easy. The hospital staff helped to keep my spirits up and also with setting up a tablet for me to do video calls with my family and friends while I was in the hospital.

Though that round of chemotherapy put me into remission for a period of time, I later came up as MRD-positive and received a targeted chemotherapy as a third round of therapy followed by a stem cell transplant. I had some graft-versus-host disease issues but got through them. I feel fortunate that there are some different treatment options for AML and would like to participate in a clinical trial to help advance treatments if I need another option on my journey. I’ve kept in touch with other patients in my AML support group during my journey from diagnosis, treatments, and recovery. I know that I couldn’t have gotten through my physical and mental challenges without them.

Though AML sounded scary at first, the future of treatment looks bright to me with emerging research and treatment options. I hope that sharing my story will make a difference for other AML patients and especially those who may come up against barriers. 

No matter who you are, being proactive is a critical step in your AML journey. Stay [ACT]IVATED by being informed, empowered, and engaged in your care.

Share Your Feedback About [ACT]IVATED AML

[ACT]IVATED: Empowering Endometrial Cancer Awareness & Action

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Patient Empowerment Network (PEN) is committed to helping educate and empower patients and care partners in the endometrial cancer community. Endometrial cancer treatment options are ever-evolving with new treatments, and it’s important for patients and families to educate themselves about clinical trials, risk factors, barriers to and disparities in care. With this goal in mind, PEN continues to build on to its  [ACT]IVATED Endometrial Cancer program, which aims to inform, empower, and engage patients to stay updated about the latest in endometrial cancer care.

Endometrial cancer awareness needs more visibility for multiple reasons. The incidence rate and mortality rate for endometrial cancer is increasing rather than decreasing, and the rates are rising more rapidly in non-white patient groups and ethnicities. 

PEN is proud to add information about endometrial cancer to educate more patients and their families about this rising health concern. Cancer survivor Lisa Hatfield interviewed expert Dr. Charlotte Gamble from MedStar Health and Dr. Emily Hinchcliff from Northwestern Medicine as part of [ACT]IVATED Endometrial Cancer.    

Endometrial cancer patient Sharon also shared her personal journey with cancer and highlighted some things she has learned. “After my cancer experience, I want to educate other women about what I’ve learned about endometrial cancer. Black women have nearly twice the death rate from endometrial cancer compared to white women. Hispanic, Black, and Asian women are not represented in clinical trials at equal rates to white women. And Black women are also diagnosed more frequently with rare but aggressive endometrial cancer forms.”

Endometrial Cancer Risk Factors

 Endometrial cancer may result from one or more risk factors, so it’s vital for patients to educate themselves about risk factors for early detection and treatment. Dr. Emily Hinchcliff from Northwestern Medicine discussed known risk factors for endometrial cancer. “I… think the important ones to highlight are certainly obesity. This I think is a large driver of why there is increasing incidence of endometrial cancer. This relates to kind of the hormonal regulation. Obesity results in increasing levels of estrogen that disproportionately affect the endometrium. And then similar to that, certain hormonal syndromes where women have irregular or infrequent periods like polycystic ovarian syndrome can also put them at higher risk. More globally, I think age, family history are also risk factors. And then as I mentioned, unfortunately, women who are non-white have a higher risk of endometrial cancer mortality, especially as relates to some of the higher risk endometrial cancer subtypes.”

Some patients may have questions about the endometrial cancer risk of using hair straightening beauty products. Dr. Charlotte Gamble from MedStar Health discussed what is known and what still needs more research about this potential risk factor. “…within the past few years, there have been a few major studies that have looked at patients, looking back at patients who have then developed endometrial cancer and seeing what kind of risk factors they might have had compared to patients who didn’t develop endometrial cancers. And looking at the types of patients within these studies, there are some subtle differences that need to be addressed. 

Dr. Gamble explained about the patient group in the research study. “One of the major studies was done in a cohort group of patients who had actually close family members who had breast cancer. And so this is actually a very specific type of patient population where they were already at somewhat of an increased risk of developing a type of a cancer, because they had a relative that had breast cancer. And in this cohort of patients, they found that the frequent use of hair straightener products was associated with a higher likelihood of developing uterine cancer.” The patient group was not only comprised mainly of patients with a relative with cancer but also mostly white patients rather than Black patients who most commonly use hair straightener products. With these major study issues that need additional research studies to resolve, there may be an endometrial cancer risk with the products, but no concrete conclusions can be drawn yet.

Endometrial Cancer Disparities and Challenges

 At the National Institutes of Health (NIH), endometrial cancer is one of the lowest funded studies. Dr. Gamble discussed some of the encouraging news about endometrial cancer treatments. “…having major trials come out over the past couple of years that really look at survival opportunities with the leveraged use of immunotherapies is something that is both exciting and invigorating to the field and hopefully can potentiate further funding from the NCI to be able to study this disease type.”

Endometrial cancer is a cancer that shows some disparities in health outcomes. Dr. Hinchcliff discussed racial disparities and how research can help address disparities. “We know, as a field, as a kind of medical subspecialty, that there is a racial disparity in endometrial cancer mortality. While there is a lot of research going on to address the kind of potential biologic component there, is there something different about the cancers that are developed in different racial groups? I think there’s also really important research going on about the kind of systemic and cultural barriers and differences that women of different races experience that also can dramatically impact their cancer care.”

Clinical trials are the primary way to move research and treatment advancements forward for endometrial cancer patients. Dr. Gamble discussed primary reasons for clinical trial challenges. “A lot of times when we see that these trials that are published might not represent a racially diverse group of patients. Oftentimes it’s because of two reasons. One, patients aren’t even offered clinical trials, even if they are eligible. Or two, patients might be getting care at a health facility that doesn’t have access or the infrastructure to enroll them on these clinical trials that could be available, perhaps at a regionally nearby cancer center.”

Where patients live also has an impact on their health outcomes. Dr. Gamble shared information about patients residing in rural areas. “And it looks like patients who are living rurally don’t live as long as patients who live in the cities. And so just finding differences and seeing kind of how, again, this critical race practice and how the systems and structures in the United States have contributed or might contribute to these differences that we’re seeing, has classically and historically been easy low hanging fruit.”

Endometrial Cancer Care Solutions and Successes

 With endometrial cancer disparities gaining increased awareness, researchers and healthcare systems have undertaken some efforts to reduce disparities in health outcomes. Diagnostic testing tools and clinical trial support are two ways to help improve endometrial cancer care in underrepresented communities. Dr. Hinchcliff discussed undertakings by Northwestern University. “So one of the ones that I have been working on closely is there is an ever-increasing number of diagnostic testing tools that we have within our kind of armamentarium. And so one particular test that patients may have read about or heard about is something called circulating tumor DNA.” Dr. Hinchclliff continued about efforts to improve clinical trial access, “The other thing that one of my colleagues here is working on is trying to really create access for women who have limited access to healthcare. So we have developed a clinical trial platform to allow the women, specifically of Chicago, to better understand their options for clinical trials across the institutions in Chicago.”

[ACT]IVATED Endometrial Cancer Program Resources

The [ACT]IVATED Endometrial Cancer program series takes a three-part approach to inform, empower, and engage both the overall endometrial cancer community and endometrial cancer patient groups who experience health disparities. The series includes the following resources:

Though there are endometrial cancer disparities, patients and care partners can be proactive in educating themselves to help work toward optimal care. We hope you can take advantage of these valuable resources to aid in your endometrial cancer care for yourself or for your loved one.

AI Allies: How Artificial Intelligence Can Support Patients To Cope with Cancer

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A cancer diagnosis can be both physically and emotionally challenging. As cancer patients learn how to cope with the disease[1] and manage side effects[2], artificial intelligence (AI) tools like ChatGPT are emerging as valuable allies. This article explores ten ways ChatGPT can help you manage your cancer journey more effectively.

What is ChatGPT

ChatGPT is an AI language model developed by OpenAI[3], designed to simulate human-like conversation. Think of it as a smart chatbot that can craft responses that sound like they came from a person all based on what you ask or tell it.

ChatGPT 4 is the latest version, offering advanced features and improvements over previous versions. [4] However, you have to pay to get the full benefits of ChatGPT 4. ChatGPT 3.5, though older, is still available for free and is a reliable option for those who don’t need the full capabilities of ChatGPT 4.

Are there Alternatives to ChatGPT?

Yes, several other chatbots and AI language models can understand and generate human-like text. Examples include Microsoft Copilot and Perplexity.ai.

10 Ways To Use ChatGPT to Cope with Cancer

1. Explaining Medical Terms

Medical jargon can be confusing. ChatGPT can break down complex terms into understandable language. For instance, you could ask, “What does ‘carcinoma’ mean in simple terms?” This can help you understand essential terms without feeling overwhelmed by medical language.

2. Detailing Treatment Options

ChatGPT can provide an overview of various treatments. For example, you might ask, “Can you explain the different types of chemotherapy?” Understanding your options can empower you to make informed decisions about your care.

3. Treatment Side Effect Management

Knowing what to expect from treatment can ease anxiety. ChatGPT can inform you about common side effects and how to manage them. For instance, you can ask, “How can I manage nausea during chemotherapy?” ChatGPT can provide detailed, user-friendly responses, helping you prepare for and cope with treatment side effects.

4. Medication Questions

Managing cancer medications can be complex, especially with multiple drugs involved. ChatGPT can help you understand your medication schedules, potential interactions, and what to do if you miss a dose. Sample questions might include, “Are there any foods or drinks I should avoid while taking this drug?” or “What should I do if I miss a dose of my cancer medication?”

5. Managing Stress and Anxiety

A cancer diagnosis can take a heavy emotional toll. It’s common to feel anxious, fearful, and uncertain, and having a supportive resource can greatly reduce these feelings. ChatGPT can serve as a virtual companion, available 24/7. While it cannot replace human interaction, it can offer a comforting presence during lonely or anxious moments. For instance, you might express, “I’m feeling overwhelmed,” and in return receive a supportive response such as, “I’m here for you. Let’s discuss what’s troubling you.”

6. Finding Resources and Support Groups

ChatGPT can suggest resources, including support groups and educational materials, to help patients connect with others and stay informed. It can be helpful to ask, “Can you recommend any online support groups for cancer patients?”

7. Exercise Recommendations

Engaging in exercise while undergoing treatment can enhance both your emotional and physical health by boosting your mood and energy levels. If you ask ChatGPT, “What are some safe exercises for someone undergoing cancer treatment?” it will  give you some suitable options.

8. Nutritional Advice

Proper nutrition can support your body’s healing process and improve your overall health. Ask ChatGPT, “Can you recommend a diet that supports cancer treatment?”

9. Preparing for Doctor Visits

ChatGPT can help you prepare questions for doctor visits so you can get the most out of your appointments. For instance, you might ask, “What questions should I ask my oncologist about my treatment plan?”

10. Symptom Tracking and Management

ChatGPT can provide tips on how to monitor and manage your symptoms more effectively. For example, you could ask, “How can I track my symptoms and know when to call my doctor?” This can help you stay proactive about your health.

How to Ask Clear Questions to ChatGPT

If you want the best responses from ChatGPT, it’s important to ask questions that are clear and specific. Below are some tips to help you do this.

  • Be specific: Clearly state what you want to know. Instead of asking, “Tell me about cancer,” ask, “What are some common side effects of breast cancer treatment?”
  • Provide context: Give background information if relevant. For example, “I am undergoing radiation therapy for lung cancer. What side effects should I expect?”
  • Ask follow-up questions: If the initial response isn’t comprehensive, ask additional questions to get more detailed information.

Using AI with Discernment: A Word of Caution

While ChatGPT can provide valuable support, it’s important to use it with discernment. AI is not a doctor; it’s a sophisticated algorithm designed to process and generate human-like text. As much as ChatGPT aims for accuracy, it may occasionally produce incorrect or outdated information. Always cross-check with reputable medical sources before making decisions based on AI advice. As AI continues to evolve, its role in healthcare will likely expand[5], but human oversight remains indispensable.

[1] Optimizing ChatGPT: How Patients With Cancer Can Use AI as a Thought Partner | Cancer Nursing Today

[2] Artificial intelligence chatbots will revolutionize how cancer patients access information: ChatGPT represents a paradigm-shift | JNCI Cancer Spectrum | Oxford Academic (oup.com)

[3] Introducing ChatGPT | OpenAI

[4] GPT-4 vs. ChatGPT-3.5: What’s the Difference? | PCMag

[5] Walker H, Ghani S, Kuemmerli C, Nebiker C, Müller B, Raptis D, Staubli S Reliability of Medical Information Provided by ChatGPT: Assessment Against Clinical Guidelines and Patient Information Quality Instrument J Med Internet Res 2023;25:e47479

URL: https://www.jmir.org/2023/1/e47479

DOI: 10.2196/47479

Chicago – All That Jazz AND a Bunch of Cancer Nerds

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Next week is the most exciting time of year for those of us who work in and around cancer. The American Society of Clinical Oncology takes over Chicago the first weekend of June every year for its annual meeting (known simply as ASCO), and our PEN team will be there in full force! With over 45,000 attendees expected, it gives us a great opportunity to highlight our programs that provide impact for cancer patients, their care partners, and healthcare professionals. We have a booth, courtesy of ASCO, and can interact with researchers, providers, fellow advocates, and survivors.  

More than anything, being in ASCO’s gigantic exhibit hall at the McCormick Center gives you a feeling of just how many individuals devote their careers to fighting cancer. And with all the great news releases that are sure to come next week as important research results are reported, the sense of progress and hope is tremendous. 

Be sure to follow PEN on social media as we will share our experiences and help you understand the advances in treatment shared at the event: 

And join us (including our Staff, Board and Empowerment Lead survivors) to celebrate Cancer Survivors Day on Sunday, June 2.  

Mental Health

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There’s a stunning statistic that one in four cancer patients experience depression (https://www.cancer.gov/about-cancer/coping/feelings/depression-hp-pdq). Depression isn’t just feeling sad, as is natural with a cancer diagnosis. Depression is a real medical diagnosis with symptoms, which can range from lack of interest, weight gain and insomnia to suicidal ideation. Most importantly, depression is a condition with a wider than ever range of treatments. 

I love the lyric from Taylor Swift’s new song: “I’m so depressed I act like it’s my birthday every day.” That’s MY flavor of depression: I have always seemed to be the happiest, least mental health-impacted person you’ve ever met, but that’s not the case. My outside did not match my inside. In 2006, I sought help and began taking antidepressants. I’m so fortunate that i was already taking care of my emotional and mental health when I got my cancer diagnosis in 2010. We adjusted, rather than starting from scratch. 

After getting the right balance of medication and therapy, I felt so much better that I pledged I’d wear a sign saying “I’m on psych meds” if it would help someone else. So that’s this message. It’s okay to NOT be okay. It’s NOT okay to not try to get help. 

If you have tooth pain, you’re going to the dentist, right? Even better, you go for regular cleanings and exams to prevent more serious issues. And, you do your own part to keep problems at bay by brushing and flossing. There are mental health equivalents to all those parts of dental health, and this list will help you find resources. 

Crisis Resources:

Therapy Resources:

  • SonderMind– matches you to a licensed therapist and offer in-person and online therapy. Many insurance/health plans accepted. Talk to a SonderMind Wellness Coordinator: (844) THERAPY.
  • TalkSpace: Online mental health treatment options, including psychiatry. Many insurance/health plans accepted.
  • GrowTherapy: Online mental health treatment options, including psychiatry. Many insurance/health plans accepted.
  • Headway: Online mental health treatment options, including psychiatry. Many insurance/health plans accepted.
  • Therapy for Black Girls: Therapy for Black Girls is an online space dedicated to encouraging the mental wellness of Black women and girls. Therapist listing for both in-person and virtual therapy. Many therapists are covered by health plans/insurance.
  • National Queer and Trans Therapists of Color Network: The directory is an interactive digital resource that helps QTPoC locate QTPoC mental health practitioners across the country.
  • Latinx Therapy: On-line directory and digital resource that helps locate culturally attuned and inclusive therapy for Latinx community. Some therapists accept insurance/health care plans.
  • Psychology Today – Therapist Finder – A tool to find therapists near you with filters for specific issues like cancer-related psychological distress.
  • Valera– Online mental health treatment options, including psychiatry. Many insurance/health plans accepted.
  • 7 Cups – Provides online therapy and free support from volunteers trained in emotional support.
  • Mental Health America– General mental health resources that can be very useful for those dealing with cancer-related stress.
  • GoodTherapy– Another therapy directory that helps individuals find therapists with specific experience supporting cancer patients and their families.

Cancer Support Resources:

FLT3 Inhibitors for AML Update

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Introduction

Mutations in the FLT3 (fms-like tyrosine kinase 3) gene are the most common mutations seen in Acute Myeloid Leukemia (AML) patients. FLT3 mutations are seen in about 30% of AML patients. There are 2 different FLT3 mutations, FLT3-ITD (internal tandem duplication) mutation and tyrosine kinase domain mutations (TKD) mutation. Here I report some newer results of treatments with FLT3 inhibitors, that I have come across in the last several months.

There are quite a few drugs that target the FLT3 gene, including:

First generation drugs:

  • Sorafenib (Nexavar)
  • Midostaurin (Rydapt)
  • Lestaurtinib clinical development of lestaurtinib has been discontinued as it did not provide significant clinical benefit.

Second generation drugs, which tend to have fewer and less severe side effects and are more effective include:

  • Gilteritinib (Xospata)
  • Quizartinib (Vanflyta) – Only for ITD mutations.
  • Crenolanib – Not FDA approved.

FLT3 inhibitors are effective treatments for AML with a FLT3 mutation. However, there are still a number of open questions. How should FLT3 inhibitors be used, with induction chemo, with consolidation chemo and/or for maintenance after a stem cell transplant (SCT) or chemo? Can they be used as a single agent for treating patients who are not good candidates for chemotherapy? Do they work well with newer treatments, specifically with azacitidine and ventoclax regimens? There have not been a lot of comparison between the different drugs. Finally, there is the question of why all these drugs have names that are barely pronounceable!

Gilterinib

There is a new study looking at the use of gilterinib as maintenance after SCT. This was a multi-national randomized study, comparing maintenance with gIlterinib against placebo. The result was overall the patients who received gilterinib had better relapse-free survival (RFS) compared to patients who received placebo. However, this difference was not considered statically significant.  However, the trial had a pre-specified secondary objective to look at the subgroup of patients who had measurable residual disease (MRD), that is they were MRD+.

About half of the patients were MRD+ either before SCT or after (or both). In this group, the RFS survival in the patients receiving gilterinib was significantly greater than the placebo group. Unfortunately, there were more side effects in the gilterinib group. It is likely that, because of this study, patients who are FLT3+ and undergoing a transplant will get gilterinib as maintenance if they are MRD+ and not if they are MRD-. The use of gilterinib or other FLT3 inhibitors as maintenance therapy will continue to be a subject of active research.

Quizartinib

I wrote a post on quizartiinb: Quizartinib in FLT3-ITD-Positive AML that was an overview of a trial of this drug along with induction and consolidation chemo and as maintenance after chemotherapy. In July, 2023, Quizartinib was approved for treatment of FLT3-ITD AML in the United States by the FDA.

Crenolanib

Crenolanib is a second-generation FLT3 agent that works for both FLT3-ITD and FLT3-TKD mutations. In Crenolanib and Intensive Chemotherapy for Adults With Newly Diagnosed FLT3-Mutated AML, crenolanib was given with “7+3:” induction and then with consolidation chemotherapy and as maintenance therapy after consolidation chemo and after a SCT. About 2/3 of patients were younger than 60, but patients as old as 75 were included. Although this was not a randomized trial and was fairly small (44 patients), it seemed that Crenolanib added to chemotherapy and as maintenance improved survival compared to midostaurin (the first drug approved for FLT3 AML) and quizartiinb (described above).

Sorafenib

While sorafenib is an FLT3 inhibitor, this first study is on its use in AML patients even if they did have a FLT3 mutation. Previous studies had shown sorafenib improved survival when given with standard “7+3” induction for AML. This study (Sorafenib Plus Cladribine, High-Dose Cytarabine, G-CSF, and Mitoxantrone for Untreated AML) looked at sorafenib with cladribine, high-dose cytarabine, granulocyte colony–stimulating factor, and mitoxantrone (CLAG-M). The first part of the study (Phase I) tried increasing doses of sorafenib and mitoxantrone. The Phase II part of the study used the recommended phase 2 dose (RP2D) to treat more patients. When compared with historical controls who received CLAG-M without sorafenib, the patients who received the RP2D had improved survival.

Finally, there is a report on the long term follow-up of a trial looking at using sorafenib as maintenance therapy after a transplant (Sorafenib Maintenance After Allogeneic HSCT in Patients With AML With FLT3 Internal Tandem Duplications). The use of sorafenib as maintenance reduced relapse which improved survival in patients with FLT3-ITD AML. The non-relapse mortality and the incidence of chronic Graft-Versus-Host Disease (GVHD) in those who had a transplant was similar in patients who received sorafenib and those who did not. This result was sustained long-term (with a median follow-up of about 5 years).

Conclusion

The best way to use FLT3 inhibitors in patients with FLT3 mutation is still an area of active research. Newer agents promise better results – fewer side effects and better survival.

Further Reading

FLT3 Tyrosine Kinase Inhibitors for the Treatment of Fit and Unfit Patients with FLT3-Mutated AML: A Systematic Review, Int J Mol Sci. 2021 Jun; 22(11): 5873.

Molecular Mechanisms of Resistance to FLT3 Inhibitors in Acute Myeloid Leukemia: Ongoing Challenges and Future Treatments, Cells 2020, 9(11), 2493.

Gilteritinib as Posttransplant Maintenance for AML With Internal Tandem Duplication Mutation of FLT3, Practice Update (registration required, free), March 26, 2024.

Gilteritinib as Post-Transplant Maintenance for Acute Myeloid Leukemia With Internal Tandem Duplication Mutation of FLT3, Medscape, June 21, 2023.

Gilteritinib as Post-Transplant Maintenance for Acute Myeloid Leukemia With Internal Tandem Duplication Mutation of FLT3, Journal of Cinical Oncology. March 12, 2024..

Quizartinib Approval Adds New Treatment Option for AML, Including in Older Patients , National Cancer Institute, Cancer Currents Blog , August 15, 2023.

Crenolanib and Intensive Chemotherapy for Adults With Newly Diagnosed FLT3-Mutated AML, Practice Update (registration required, free), March 4, 2024.

Crenolanib and Intensive Chemotherapy in Adults With Newly Diagnosed FLT3-Mutated AML (JCO article) Journal of Clinical Oncology February 07, 2024.

Sorafenib Plus Cladribine, High-Dose Cytarabine, G-CSF, and Mitoxantrone for Untreated AML Practice Update (registration required, free), July 25, 2023.

Phase 1/2 study of sorafenib added to cladribine, high-dose cytarabine, G-CSF, and mitoxantrone in untreated AML, Blood Adv (2023) 7 (17): 4950–4961.

Sorafenib Maintenance After Allogeneic HSCT in Patients With AML With FLT3 Internal Tandem Duplications, Practice Update (registration required, free), July 25, 2023.

Sorafenib maintenance after allogeneic haemopoietic stem-cell transplantation in patients with FLT3-ITD acute myeloid leukaemia: long-term follow-up of an open-label, multicentre, randomised, phase 3 trial, The Lancet, Volume 10, ISSUE 8, e600-e611, August 2023

Tips for Parenting with Cancer

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In November 2018, I was diagnosed with Stage IIIc colon cancer. I was 37 years old and I just returned to work from my parental leave. When I heard those dreaded words “you have cancer” my first thoughts were of my small children. At the time of my diagnosis, I had a 6 month old baby and a 3 year old. I was terrified. How would we weather this storm? How would I care for my baby through surgery and chemo? How would I help my curious and observant 3 year old understand everything that was going on? On top of all of those questions, I often felt like the youngest person at the infusion center and the ONLY person navigating cancer, preschool drop-offs and middle of the night wake-ups.

Juggling two small kids is hard work on a good day; when you add a cancer diagnosis and treatment to the mix, an already full plate can simply overflow. Here are some tips to help you if you are doing the seemingly impossible work of parenting with cancer.

Talk to your kids.

I was nervous to talk to my curious three-year old about my cancer. I knew that she was picking up on hushed tones, tears, and changes to our family’s routine. It was scary to start the conversation but I knew that she needed to have an age-appropriate understanding of what was happening in order to best cope. Kids are magical thinkers and left to their own devices may create a story about what is happening that is even scarier than what is actually happening.

When you talk to your kids remember to be honest, clear, and to use age-appropriate language. If you are having a hard time getting started, read a book about cancer together. Sometimes reading together can take the edge off just enough to start a larger conversation.

It’s o.k. to not know all the answers.

You’ll have more than one conversation with your child about cancer and that is o.k. Let them know that they can come back to talk with you at anytime. If they ask you something that you don’t know, let them know that you’ll try to find the answer. (And then you actually have to try to find it!) You’ll be building trust with them.

Maintain your child’s routine.

Ok, so this can be hard when you are balancing never-ending doctor’s appointments but the more you can keep your child’s routine the same as it was before cancer, it will help to reduce their stress and the big emotions that can come alongside a parent’s cancer. If you can’t maintain a routine, make sure that you talk to them about it. Or, I’m a big fan of visual calendars (you can always make your own or there are plenty to purchase on-line) to help kids know what’s going on day-to-day.

Parent from the couch (or bed!).

You may be too tired to go to the park, so invite your child to meet you where you are at. From a couch or the bed, you can still color, complete a simple puzzle, read, or play I Spy. If they want to play, but you are too tired, just stay on the couch and WATCH your child play on the floor. You won’t believe how excited they will be to tell you all about the games they are playing. I really like the book Horizontal Parenting: How to Entertain Your Kid While Lying Down by Michelle Woo. It’s not written for a parent with cancer but it is perfect for those of us horizontal parenting on the regular.

Ask for help.

It can be hard to ask for help, especially when you are in the thick of treatment and doctor’s appointments… when you might need it most. Make a list of things that will ACTUALLY be helpful to you and your family, so when someone says to you “let me know how I can help,” you’ll just say, “walking the dog on Wednesday afternoons would be so great!” Or, “if you could take out the trash for the next month, that would be really helpful.” I guarantee your friends will be so glad to help in the ways you most need.

Seek out community.

Being a parent with cancer can be lonely but know that you are not alone. Having the support of people in the same or a similar boat not only helps to cut some of the isolation you may be facing but they can also provide practical advice (i.e. How did you get your toddler to stop bumping into your port? My child is having BIG feelings… how did you help them cope? How do you make dinner when nothing tastes good?”). Look into support groups at your hospital or check out virtual options.

Tell your child(ren) you love them. They already know it but telling them again will feel good to you and to them!

Empowering Multiple Myeloma Providers to Empower Their Patients

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Empowering patients is at the heart of efforts at Patient Empowerment Network (PEN), and work toward reducing health disparities is part of conversations among healthcare professionals. With this in mind, PEN has taken on a new initiative for multiple myeloma, the Empowering Providers to Empower Patients (EPEP) initiative. The program expands PEN’s reach to healthcare professionals with the goal to improve physician-patient communication; shared decision-making; and the role that myeloma patients, survivors, care partners, and healthcare professionals each play in the shared decision-making process.

The EPEP initiative includes the following resources:

  • EPEP Roundtables with Dr. Nicole Rochester and myeloma experts Dr. Beth Faiman, Dr. Craig Cole, RuthAnn Gordon and Charise Gleason discuss a range of topics including how to help your myeloma patients play an active role in managing their care, healthcare provider recommended strategies for managing disease burden, the importance of advanced practice clinicians on the myeloma health care team, and ins and outs of clinical trials and communication about clinical trials.
  • EPEP Resources provides the resource guide, infographics, blog, peer insight videos, and other resources to improve patient care.
  • EPEP Portal utilizes PEN’s robust resource library and that of numerous trusted advocacy partners to create a vetted list of patient education resources to share with your patients. PEN delivers a curated PDF according to the patient’s interests and delivers it efficiently to their inbox.

Panel of Experts

Key Takeaways from Myeloma Experts

PEN had the opportunity to interview experts Dr. Beth Faiman, RuthAnn Gordon, Charise Gleason,  and Dr. Craig Cole to learn about some of their expertise. They shared their views about essential ways that they work with patients to help empower them and to inform them about research and clinical trials.

The number of myeloma treatment options has expanded tremendously over the past few decades, and nurses play a key role in helping patients. Expert Dr. Beth Faiman from Taussig Cancer Institute shared her perspective about how patient care has changed. “…the difference from before when we had very few available therapies to now we have an armamentarium of drugs, and so deciding whether or not to participate in a clinical trial is super important.

And how can we support our patients who are now living a longer life span with all these cumulative physical and financial issues? How can the nurses support the patients to get the access to the drugs and access to the financial resources they need so that they continue living a good quality of life?…I think nurses can fill that critical gap of finding resources for patients to allow them to participate in clinical trials to live a better life.” 

The expansion of treatment options has also generated some more complex clinical trials. Expert research nurse RuthAnn Gordon from Memorial Sloan Kettering Cancer Center explained the role of research nurses in these more involved trials. “…we’re guiding them, we’re educating them, we’re ensuring that they do understand the potential side effects, but do understand also what their role is in the clinical trial and what they can expect. And I think that in terms of what has changed is that we have really put more value on the fact that having that nurse that has the expertise in the clinical trial and really can gatekeep all of the patient care coordination that that involves from a clinician experience and from a clinician perspective, has really helped to ensure that our patients are ready, that we can do our very complex trials.”

Panel of Experts

Solutions for Reducing Myeloma Disparities

Another essential factor in clinical trial participation is educating patients about trials. Black myeloma patients comprise 20 percent of myeloma patients but only 4 percent of myeloma clinical trial participants. Expert Dr. Craig Cole from Karmanos Cancer Institute shared his perspective about how informing all healthcare members can create a more inviting atmosphere around clinical trials. “We make sure that the treatment nurses, the MAs, the intake people know what we’re doing, know about our clinical trials, because that’s the fun part about what we do.

The fun part is when we say, look, my goodness, this four-drug therapy had a 100 percent response rate. That shouldn’t be left in the physician compartment. It really shouldn’t be left in the provider compartment. That excitement should be clinic-wide. And when you have that all-in approach where everybody’s involved, everyone’s excited about clinical trials, it produces a culture of clinical trials that everybody wants to be part of, and the patients then can jump on that bus and feel comfortable participating in the trial.”

Involving  the entire myeloma team is truly key in expanding patient care. Expert research nurse Charise Gleason from Winship Cancer Institute explained the success they’ve seen with their team members and in their clinical trial participation rate. “The myeloma team, we have APPs who are off that day who call in for this meeting, because we go over our patients, we talk about what’s, clinical trials are available, that’s just how we practice and we think about that.  The myeloma team, we have APPs who are off that day who call in for this meeting, because we go over our patients, we talk about what’s, clinical trials are available, that’s just how we practice and we think about that.

In Atlanta, in our database, 40 percent of our data is based on Black patients. And we enroll about 32 percent to 33 percent of Black patients on clinical trials. And what our work on trials has showed us too, if you give the same access to every patient, you have good outcomes and good outcomes for Black patients, if not better, than white patients. So we all need to be versed on that, whether you’re the research nurse, the clinic nurse, the physician, the advanced practice. And so we really do bring that approach to taking care of our patients.”

Even though myeloma treatments have shown increases in the number and complexity of treatment options, vital HCP best practices can help further expansion and in empowering myeloma patients. How do we improve care of patients? And how do we work to remove barriers to clinical trial participation? We hope healthcare providers can take advantage of these timely resources of the EPEP myeloma initiative to work toward equitable and inclusive care for all myeloma patients.

Empowering Patient Advocacy: A Guide to Launching Your Voice on Substack

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If you spend any time online, you’ve probably heard of Substack, either through a newsletter subscription or from a favorite writer or blogger. But what exactly is Substack, and why is it gaining traction in patient advocacy?

Founded in 2017, Substack is a publishing platform that empowers creators to start and grow their own publications, blogs, newsletters, and podcasts.  The platform is known for its user-friendly interface and simplified setup process. While other blogging platforms may require some technical knowledge to navigate, Substack allows users to start blogging almost immediately after signing up. In addition, Substack’s subscription model provides creators with a straightforward way to monetize their content.

Beth Gainer, who initially started blogging after a breast diagnosis on WordPress, chose Substack for her current blog on art and self-care (bethlgainer.substack.com).  “I initially paid for WordPress,” she said, but “after trying to navigate this complicated platform, I realized I would need a designer to help me. I spent many hours trying to design the website myself, but I am no web designer, and obtaining one would make me dependent on that individual, not to mention costly. Using Substack is such a relief! It is so user-friendly and I like that Substack acts as a newsletter that is delivered to subscribers’ emails.”

Beth has also found a supportive community on the platform. “Substack has a support system, where experts answer questions and provide information. It supports writers, who, as we know, are often not supported in their endeavors.”

The Substack monetization feature is not something Beth is interested in, ”because most readers can’t afford to pay to read several blogs. I know I can’t.”   She believes monetization adversely affects community building.  “After I read a blog, let’s say, I want to leave a comment to participate in conversation, but sometimes I cannot because I don’t have a paid subscription to that blog. Thus, the conversation related to a blog becomes muted because fewer voices and perspectives are heard,” she explained. “Frankly, I feel deflated when I see an interesting blog heading but am unable to read or interact with that blog unless I become a paid subscriber.”

Beth added that while she is using Substack to discuss and showcase her art, which she sells, “whether or not a reader purchases my art, I want my blog’s content to always be free and accessible to anyone. This helps build a true community. I hope that Substack continues to allow free subscriptions indefinitely.”

After more than 13 years of blogging, writer and breast cancer advocate, Nancy Stordahl decided it was time for a change. She started a new blog on Substack (nancyspoint.substack.com) to expand her reach to a new audience.  “My readership on WordPress, as far as numbers go, hadn’t changed much in a while,” she said, “so I’m hoping to gain some new readers, as well as keep the ones I have, of course.”

Like Beth, Substack’s newsletter format is something that appeals to Nancy. “Mailchimp was getting too expensive for me. Once you reach a certain threshold it’s no longer free. That was fine. But I had reached the next threshold, and the monthly rate was going up again. It wasn’t feasible for me to pay for yet another tier jump.”

Substack’s multi-media format, such as hosting a podcast, audio readings and adding notes, is also a selling point for Nancy.  “Substack is popular right now, some might say trendy, “ she said, “but as an advocate and an author, it felt like something I wanted to try. My books are a significant component of my advocacy, and Substack is a great place for authors.”

Although Nancy doesn’t currently monetize her writing, she is a “big believer in compensating bloggers, writers, and advocates for their work. Advocacy isn’t easy (nor is writing) and too often advocates (and writers) are expected to offer their time, input, writing, or whatever it might be for free. That is not right. I may or may not utilize this option at some point. Regardless, my new articles will likely remain free, and there will always be a free or no pledge option.”

When it comes to community building, Nancy has noticed that “thus far, her ‘old subscribers’ have been pretty quiet on Substack, but many have stuck with me. There’s probably a learning curve for me and for them as well as far as them becoming engaged. A bit of patience is needed.”

How To Start A Substack Publication

Having read about Beth and Nancy’s experience, you may be tempted to create your own Substack publication. Below are the steps you should take.

  1. Create an Account: Visit Substack.com and click on “Start Writing” to create an account. Set up your profile with a photo, your first name, and a short bio.
  2. Choose a Subdomain: A subdomain on Substack is a unique web address that identifies a publication on the Substack platform. When you sign up for Substack, you’re given a default subdomain that you can customize  – for example, nancyspoint.substack.com or bethlgainer.substack.com. You can also connect a custom domain to your publication. Using a custom domain for your Substack publication allows you to use your own web address instead of the default yourname.substack.com for your newsletter.  For use of a custom domain, Substack charges a one-time fee of $50 USD.
  3. Turn on Paid Subscriptions: You can choose to turn on paid subscriptions, or publish for free. If you turn on paid subscriptions, Substack will keep a 10% cut of revenues.
  4. Choose a Theme: Choose one of the basic themes provided by Substack. This will be the visual layout of your publication.
  5. Upload Your Email List: If you already have an email list of potential subscribers, you can upload it to Substack. This will allow you to reach out to these individuals with your first post.
  6. Publish Your First Post: Your first post could be a text post, discussion thread, podcast, video, or note. Make sure to include a “subscribe” button so that readers can easily subscribe to your publication.
  7. Customize Your Publication: Your name, logo, layout and publication descriptions are all easy to customize using the settings.
  8. Create an Editorial Calendar: Consistency is key to growing your publication. It’s recommended to publish a post at least once a week as a benchmark to get started. Publishing on a regular schedule helps readers build a habit and demonstrates your own commitment to your work.
  9. Announce Your Publication: The launch is an important moment for your publication. It’s an opportunity to summon your supporters and drive a wave of excitement, attention, and subscriptions2. Publish an announcement post and let the world know you are starting something new.

For more blogging tips, check out 9 Tips to Help You Build a Better Advocacy Blog

Empowering Patients Facing a Renal Cell Carcinoma Diagnosis

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Renal cell carcinoma (RCC), commonly referred to as kidney cancer, may present itself to patients as daunting and multifaceted. What proactive measures can patients and their caregivers implement to optimize their care experience?  With this idea in mind, the Patient Empowerment Network initiated the START HERE Renal Cell Carcinoma program, which aims to close the gap in the expert and patient voice to build empowerment.

Lisa Hatfield and Dr. Moshe Ornstein

Patient-Expert Q&A Webinar Topics and Key Takeaways

 In the Patient-Expert Q&A webinar, kidney cancer expert Dr. Moshe Ornstein shared his expertise to help patients and care partners boost their knowledge and confidence. Cancer patient and Empowerment Lead Lisa Hatfield moderated the discussions and shared some of her perspectives as a patient. Some of the discussion covered:

Kidney cancer diagnosis breaks down into two main categories. Dr. Ornstein detailed the two types. “There is the patient that presents with a localized kidney cancer. So they came to the emergency room because they were having belly pain, and they were found to have a big mass growing in their kidney that is proven to be kidney cancer. And then there’s the patient who has advanced disease, metastatic disease that has spread beyond the kidney. Either they came in with metastatic disease, in other words, their kidneys in place, and they have cancer beyond the kidney. Or they already had a surgery a year or two ago, and now they come back, and the cancer has returned elsewhere in the body.”

Preparing patients for their cancer journey is top of mind for Dr. Ornstein, and he discussed how he approaches this preparation for the main types of patients. “We talk about what kind of surveillance, what kind of watching or monitoring of the cancer are we going to do, how often they’re going to get CAT scans. So really try to give them the big picture about what cancer they have, what the outlook is, and what we’re going to do to keep a close eye on them. For the patient who has an advanced cancer, in some ways it’s similar. When I say advanced, I mean a cancer that has spread beyond the kidney that’s going to require therapy, immunotherapy, targeted therapy, a clinical trial, whatever it might be.”

Some kidney cancer patients may wonder or even feel remorse over what caused them to get cancer. Dr. Ornstein explained that even though the cause isn’t always known, there are some known risk factors like asbestos, some types of gasoline exposure, and secondhand smoke. Dr. Ornstein also shared, “We do have known risk factors for kidney cancer, whether it’s obesity, smoking, high blood pressure, chronic kidney disease. So there are certain risk factors and associations, but it’s really difficult for a specific patient to be able to pinpoint this caused the kidney cancer. And I think it’s reassuring for patients to know that as a general rule, it’s not something that a patient did that caused the kidney cancer, and it’s not somebody’s fault that they have the kidney cancer.”

Although some kidney cancer patients will be monitored with imaging scans rather than starting treatment right away, Dr. Ornstein shared that the vast majority will start treatment as soon as possible. “…probably 95 percent of these patients are going to get an immunotherapy-based combination as their first line of treatment. Immunotherapy has different names in the literature. You might see immunotherapy, you might see checkpoint inhibitors. But what these are doing is they’re “releasing the brakes” on the body’s own immune system to attack the cancer. So the immunotherapy is either given in combination with another immunotherapy.”

Lisa Hatfield and Dr. Moshe Ornstein

Kidney cancer clinical trials generally fall into one of two buckets. Dr. Ornstein explained that one bucket is comprised of clinical trials that are investigating novel therapies. He explained further about the second bucket of clinical trials. “…And the other class of clinical trials is really sort of optimizing the drugs we already have. So we know that as a general rule, giving immunotherapy plus targeted therapy is better than giving immunotherapy alone. But what about trials looking at giving two immunotherapies plus a targeted therapy? We know that patients either get immunotherapy and immunotherapy, or an immunotherapy and a targeted therapy. What about if we gave two immunotherapies and a targeted therapy? Can three be better than two? So there are trials both in the front-line setting and in the refractory setting, looking at these novel therapies in the one bucket. And then there are also trials looking at these combinations and different ways of mixing and matching therapies that we already have to optimize patient outcomes.”

It’s an exciting time with new kidney cancer therapies, and these are just some of the main takeaways from the Renal Cell Carcinoma Patient-Expert Q&A webinar. We hope you can use these valuable kidney cancer resources to build your knowledge and confidence toward becoming a more empowered patient or care partner. 

START HERE Renal Cell Carcinoma Program Resources

The program series includes the following resources:

What’s REALLY the News You Can Use?

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“New study shows baby otters prevent diseases!” “Chocolate promotes weight loss!” Don’t we wish headlines like that were true?  Unfortunately, some of the things we read about possible new cancer treatments are just about as likely.   

Because we seek hope from these good reports, it can be easy to misinterpret what we hear about studies and results. How do you know when reading about a study’s findings whether it’s a real breakthrough or just a sensational story? 

First, let’s go over the basics of research.  

Basics of Research

  • Scientific method is how scientists figure out if some treatment makes a difference by conducting an experiment.  
  • In cancer research, the experimental process of understanding if a particular treatment is effective and safe is called a clinical trial.  
  • One study can seem to prove almost anything; it’s only through repeated, tightly monitored and designed clinical research that we can know that a treatment actually works.  An example: I ate chocolate AND I lost weight; that doesn’t mean the chocolate CAUSED the weight loss. 

Cancer Research Facts

  • There are strict regulations for designing and conducting trials and reporting results, monitored by the Food and Drug Administration (FDA). 
  • The journey from an idea to an approved treatment can take many, many years, thousands of scientists, hundreds of thousands of patients, and millions of dollars. Only a fraction of clinical trials result in an approved treatment that is available to the public.  
  • Cancer researchers start with experiments in the laboratory, often done on cells, tissues, or animals whose cells work like human cells. If the results are promising, the researcher (also known as a Principal Investigator or PI) will apply to the FDA to begin a clinical trial, sharing data and a detailed design for testing the treatment on humans.  
  • Once the application is approved, the trial begins and goes through a series of phases that are closely monitored not only by the FDA, but by the internal review board (IRB) of the institution where the trial is taking place. These phases determine if the treatment works, if it’s safe, and ultimately if it works better than what has been regarded as the “standard of care” for a specific cancer type. 
  • If the clinical trial meets the criteria stated in the initial design, it is presented to the FDA for approval. There is even more rigorous review of the research design and results, including peer review by other researchers, before the treatment is approved. 
  • Once approved for public use, the treatment is continuously scrutinized for long-term side effects and other adverse events that may indicate serious problems. Sometimes, a treatment approved for one cancer type seems promising for others, and it will go through another clinical trial. 

Here are some factors that add credibility to articles and news stories that report findings:  

  • It’s reported by a neutral (non-political or entertainment) source. Examples include the Associate Press, Nature magazine, and medical publications such as the New England Journal of Medicine of the Journal of the American Society of Clinical Oncology (ASCO). 
  • The phrase “versus standard of care” lets us know there was an experimental group that did receive the test drug and a control group that did not. 
  • Funding sources, when identified, are the National Institutes of Health, academic medical centers or research universities.  
  • The sample size is very important: the larger the study, the more significant the results and the farther along in the clinical research process it has proven valid. 
  • The entity making the report isn’t trying to see you something. 

The good news? There are AMAZING treatments currently in clinical trials that once would have seemed like science fiction. This June, our team will report “breaking news” about new cancer treatments from the ASCO annual meeting in Chicago. We are thrilled to share with you that one of OUR programs, Empowering Providers to Empower Patients (EPEP), is being published among ASCO’s online abstracts.  

Have a question about something you see online? Reach out to us at tracy@powerfulpatients.org and we will help you interpret how the information might apply to you. 

Empowering Patients: Bridging the Health Literacy Divide for Informed Decision-Making

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Health literacy, as broadly defined by the World Health Organization,  involves the capacity of individuals to “gain access to, understand, and use information in ways which promote and maintain good health for themselves, their families, and their communities.”

The goal of health literacy is not ‘dumbing down’ information; it’s about leveling up and empowering individuals to make informed decisions about their health and medical care.

The State of Health Literacy in the U.S.

According to the National Assessment of Adult Literacy, 36% of adults in the United States possess basic or below-basic health literacy. This statistic has profound and multifaceted implications. Firstly, low health literacy contributes to health inequality. Health literacy is a major barrier to accessing health resources and services. This imbalance contributes to disparities in health outcomes, creating a divide that widens existing inequalities.

Secondly, low health literacy affects individuals’ ability to engage in self-care effectively. Almost four out of ten adults struggle to manage their medications or misunderstand essential medical instructions.

Moreover, trust in healthcare providers is closely tied to health literacy. Effective healthcare relies on trust. Low health literacy, however, can undermine trust in healthcare professionals.

In our role as patient advocates, we strive to make health information more accessible, reliable, and easily understandable. Below is a checklist of seven steps you can take to improve your advocacy’s health literacy level.

7-Point Checklist to Improve Health Literacy

1. Accessibility

Healthcare is often filled with jargon and technical language, making it intimidating and confusing. The goal of our advocacy is to minimize health communication barriers so that individuals can make informed decisions no matter what their educational background or medical language experience may be. Embracing accessible language bridges the communication divide, empowering individuals to navigate the complexity of healthcare with confidence.

Actionable Tip: Break complex information down into smaller, digestible chunks to make it easier to understand. Organize information using clear headings and bullet points. If medical terms are unavoidable, provide clear definitions.

You can learn more about accessible content by reading Transforming Your Social Media Presence: 5 Steps to Foster Inclusivity and Advocate for All

2. Clear Navigation

Clear navigation of health content requires logical organization of information. For instance, when presenting information about a medical condition, organize it chronologically from symptoms to treatment options.  Additionally, a navigation system that is clear and easy to use should also work across a wide variety of devices, ensuring a consistent experience across computers, tablets, and smartphones.

Actionable Tip: Make your website or blog easy to navigate. There should be a prominent search bar and a menu with clearly labeled categories or a clickable icon to help people find the information they need when they visit your site.

3. Cultural Sensitivity

When health information reflects an individual’s cultural context, they are more likely to understand and resonate with it.  Health and culture are deeply intertwined, and cultural sensitivity involves recognizing and respecting that health is perceived and pursued differently in different cultures. Trust can be built by respecting these differences, dispelling misconceptions, and bridging gaps.

Actionable Tip: Avoid making assumptions about individuals based on stereotypes or generalizations. If possible, seek feedback from community leaders or representatives to ensure that your communications align with cultural values and sensitivities.

4. Visual Aids

Visual aids, such as charts, graphs, illustrations, and diagrams, enhance health communication by making information more engaging and accessible. Visual learners can grasp health-related concepts more easily through these aids than through text-based information. Visual aids also act as a universal language transcending linguistic barriers and making health information accessible to a wider range of individuals.

Actionable Tip: Ensure visual aids are accessible to everyone.  Provide alternative formats for those with visual impairments, such as text descriptions or audio explanations.

Further Reading: Patient Advocacy: 6 Tips for Making A Visual Impact on Social Media – Patient Empowerment Network (powerfulpatients.org)

5. Inclusive Design

Different learning styles are recognized through inclusive design. Visual aids may be preferred by some, whereas auditory information may be preferred by others. By considering different learning styles and abilities, inclusive design empowers individuals to actively participate in health education, leading to improved health literacy.

Actionable Tip:  Use alt text (short for alternative text) for images. Individuals with visual impairments can understand website images this way. In addition, consider closed captions for videos and readable fonts with sufficient color contrast.

6. Interactive Platforms

Interactive content, such as live video streaming creates an experience that reaches beyond static information dissemination. It empowers individuals to engage with expert insights and creates a sense of community around health-related topics. This approach can contribute significantly to enhancing health literacy.

Actionable Tip: Bring in healthcare professionals to share their expertise on your livestream.   Ask attendees to submit questions in advance or during the live session to encourage active participation. Closed captioning should be available to ensure inclusivity and accessibility.

7. Trustworthy Sources

Users feel more confident in the reliability of health information when credible sources and publication dates are transparently disclosed. Maintain trustworthiness by reviewing and updating health content regularly. This ensures that information remains accurate, aligns with the latest research, and meets evolving standards.

Actionable Tip: To keep users up to date on the currency of content, clearly indicate when it was last reviewed or updated. By regularly updating your content, you demonstrate your commitment to providing accurate and relevant information to your audience and establish long-term trust.

Further Reading: 12 Tips to Create an Educational and Inspiring Roundup of Healthcare News

Conclusion

The patient advocacy community can play a key role in closing the health literacy gap. By championing accessible, trustworthy health information, we contribute to a more equitable society. Our mission is clear: empower patients through knowledge, and transform health outcomes for all.

PRESS RELEASE: Patient Empowerment Network Recognized as a Healthy People 2030 Champion

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For Immediate Release:

Patient Empowerment Network Recognized as a Healthy People 2030 Champion for Supporting the Initiative’s Vision

Bothell, WA — Patient Empowerment Network (PEN) is pleased to be recognized by the Office of Disease Prevention and Health Promotion (ODPHP) within the U.S. Department of Health and Human Services (HHS) as a Healthy People 2030 Champion.

As a Healthy People 2030 Champion, Patient Empowerment Network has demonstrated a commitment to helping achieve the Healthy People 2030 vision of a society in which all people can achieve their full potential for health and well-being across the lifespan.

ODPHP recognizes Patient Empowerment Network, along with other Healthy People 2030 Champions, as part of a growing network of organizations partnering with ODPHP to improve health and well-being at the local, state, and tribal level.

“All people deserve fair access to the best healthcare and support they need, regardless of their background or circumstances,” said Tracy Rode, Executive Director of PEN. “That’s particularly true in cancer care, where underrepresented communities struggle for health equity. PEN is proud to join our efforts with other Healthy People 2030 Champions in improving care and survivorship for people with cancer.”

“ODPHP is thrilled to recognize Patient Empowerment Network for its work to support the Healthy People 2030 vision,” says RADM Paul Reed, MD, ODPHP Director. “Only by collaborating with partners nationwide can we achieve Healthy People 2030’s overarching goals and objectives.”

Healthy People 2030 is the fifth iteration of the Healthy People initiative, which sets 10- year national objectives to improve health and well-being nationwide. Healthy People 2030 Champions are public and private organizations that are working to help achieve Healthy People objectives. They receive official support and recognition from ODPHP.

About Patient Empowerment Network:

Patient Empowerment Network (PEN) is a 501(c)(3) non-profit organization trusted by millions of cancer patients, care partners, and health care professionals worldwide to achieve improved health literacy, equity, and treatment outcomes at every step of their journey. PEN’s mission is to offer trusted information to empower anyone impacted by cancer, toward fulfilling our vision of every cancer patient having the knowledge they need to navigate the complexities of cancer. www.PowerfulPatients.org

Healthy People 2030 Champion is a service mark of the U.S. Department of Health and Human Services. Used with permission. Participation by Patient Empowerment Network does not imply endorsement by HHS/ODPHP.

About the Office of Disease Prevention and Health Promotion (ODPHP)

ODPHP plays a vital role in keeping the nation healthy through Healthy People 2030, the Dietary Guidelines for Americans, the Physical Activity Guidelines for Americans, the President’s Council on Sports, Fitness & Nutrition, and other programs, services, and education activities. ODPHP is part of the Office of the Assistant Secretary for Health (OASH) within the U.S. Department of Health and Human Services. To learn more about ODPHP, visit health.gov or follow @HealthGov on Twitter.

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Your Cancer Journey is Yours 

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I’ll never forget how I felt on October 1, 2010, when a phone call changed my life. After a routine annual “neck check” turned out to not be routine at all, I learned that I had thyroid cancer. That day, I became a member of a family of over 18 million cancer survivors in the United States. 

I overshare all the time. I figure if I’m going through something, I might as well let someone else learn from it. I started sharing my diagnosis with friends, who in turn told others. And wow, did those people rally around me! Offers to drive my kids (4th and 5th grade at the time), food, gifts; people were excited to be part of my journey and to meet milestones and revel in good news. I truly felt like a “trophy patient.” And I quickly met a “scar sister,” whose surgery preceded mine by three weeks, allowing her to be an unparalleled source of information and support.  

Fast forward 13½ years, I’m still here! While I still have active cancer cells (thanks to a recurrence with metastasis in 2012), I’ve been stable since 2013. I had a squamous cell carcinoma removed from my left eyebrow in 2019, so I’ve now got two very visible scars to show for my three diagnoses.  

How does my story tie to the title, “Your cancer journey is yours”? Because YOU don’t have to overshare, or even share. YOU don’t have to be, as a friend experiencing a recurrence put it, “everyone’s inspiring cancer patient.” YOU don’t have to do blog posts, appear in videos or be in support groups. YOU don’t have to wear a ribbon or dye your hair pink or teal or whatever your cancer color is. As my kids say, “YOU do you.” Many of us feel tremendous support from the community of people who’ve faced cancer, but it’s your choice whether and with whom to share your experience. 

The National Cancer Institute defines a survivor: “An individual is considered a cancer survivor from the time of diagnosis through the balance of life. There are many types of survivors, including those living with cancer and those free of cancer.” That’s the one thing I want you to take away from this post: YOU ARE A SURVIVOR. Whether you’re newly diagnosed or have been living with or beyond cancer for years, YOU are a survivor. Survivorship is on your terms, whether you shout it from the rooftops or keep it a secret.

If you’ve been less public with your cancer journey and would like to connect with others like you, here are some options for connection: 

  • PEN’s Empowerment Leads: these wonderful volunteers are the heart of our efforts to connect survivors with support. 
  • PEN’s partner organizations that offer survivor support 
  • For support related to your exact diagnosis, visit PEN’s web site, which shares resources by cancer type. 
  • Please feel free to reach out to me at tracy@powerfulpatients.org. It would be my honor to help you find your people.

I never thought anything would mean more to me than the support I got from fellow survivors. I was wrong. Being that survivor is the most meaningful experience, and it’s why I am honored to lead the Patient Empowerment Network.