PEN Blog Archives

What Is Precision Oncology and What Does It Mean for Breast Cancer Patients?

/in , , , , , , , , /by
Bookmark (0)

No account yet? Register

What Is Precision Oncology and What Does It Mean for Breast Cancer Patients? from Patient Empowerment Network on Vimeo.

Are we closer to personalizing breast cancer treatment? Dr. Bhuvaneswari Ramaswamy defines precision oncology and explains the progress being made to make it a reality.

Dr. Bhuvaneswari Ramaswamy is the Section Chief of Breast Medical Oncology and the Director of the Medical Oncology Fellowship Program in Breast Cancer at The Ohio State College of Medicine. Learn more about Dr. Ramaswamy.

See More From INSIST! Metastatic Breast Cancer

Related Resources:

Genetic Testing VS Biomarker Testing: What’s the Difference

Genetic Testing VS Biomarker Testing: What’s the Difference?

 How Do Biomarker Test Results Impact a Breast Cancer Patient’s Prognosis

How Do Biomarker Test Results Impact a Breast Cancer Patient’s Prognosis?

 How Do Genetic Mutations Impact Breast Cancer Risk, Prognosis and Treatment

How Do Genetic Mutations Impact Breast Cancer Risk, Prognosis, and Treatment?

Transcript:

Katherine: 

We often hear the term precision oncology. What exactly does that mean? 

Dr. Ramaswamy:

So, precision oncology is again, one of the ways that we are getting better, right? So, what we are trying to understand is that originally, we just understood cancer as just where all it is and how spread it is. Again, an anatomical. Now we are getting more and more into the biology. So, in the biology we were focusing more on the RNA. There are two things, the RNA and DNA. DNA is your code, and RNA is the one that comes from the DNA kind of the message that goes, makes the protein, which changes everything in your body. So, we were focusing on the RNA, which are the biomarkers, right? Because we – you that that’s what drives the cancer. Now we are focusing more on the DNA. What is changing within the core, that blueprint in the tumors that is causing resistance that is making cancer cells worse?  

Could we target those? And so that is what is precision oncology. They’re trying to understand the genetic core change within your tumor and maybe able to target that. You could have breast cancer, you could have a completely different cancer like lung cancer. But if you have the same genomic change or gene change within the tumor, could we just target that cells and be able to get a really good response? And those are the kind of ways we are going towards. And I can tell you it is as you hear this concept, it sounds like so bizarre. I’ll tell you, I felt the same too when it all started, even as a scientist and an oncologist. But it is truly becoming a reality. And in certainly in more some cancers more than the others, but it’s slowly becoming a reality for all cancers. So definitely, again, a positive and a tailored therapy to the patient. And so that’s what we want. 

March 2023 Digital Health Roundup

/in /by
Bookmark (0)

No account yet? Register

Each month, technology allows providers and researchers to make huge advances in cancer care. Uses for artificial intelligence have expanded into the area of developing new medicines for the fight against cancer. In New Jersey, a new remote monitoring program is being utilized to help patients and providers monitor their cancer treatment journey. Scientists have developed microbubbles to use with ultrasound for more precise bowel cancer diagnosis.

Your New Medicine, Brought to You by AI

Medicines designed by artificial intelligence for conditions including lymph cancers, inflammatory diseases and motor neuron diseases are reaching trials in humans reports Politico. A.I. dramatically reduces the time it takes to develop new medications. Researchers use algorithms for A.I. to go through large amounts of data including chemical compounds, animal studies, and patient information. Using these algorithms helps scientists find what a drug needs to target in the patient’s body, what molecules will accomplish this, and even create new molecules to do the job. One of the biggest obstacles to developing new medications is collecting and reviewing vast amounts of validated data. Artificial Intelligence is making this obstacle much more manageable, improving patient outcomes. Click to read the full story.

New Jersey Cancer Care Launches Remote Patient Monitoring

With the first cohort of patients onboarded for the RPM program, the center aims to achieve greater treatment compliance and drive oncology innovation with connected medical devices, a patient app, and an integrated cloud-based clinician portal reports Healthcare IT News. Providers and patients will both benefit from remote patient monitoring by seeing patient physiological data in real time. Providers can respond quicker and adjust treatment accordingly. Patients use a smartphone app to report and track their symptoms. The patients care team can follow the information gathered in the app and improve the patient’s quality of life. Patients can choose to allow other family members to follow their information through this app, allowing for better care and communication. This remote monitoring is a part of precision oncology, allowing for a more personalized approach to patient care. Using this technology from home is more convenient for the patient physically and financially. Providers can choose to adjust patient treatments to help prevent costly hospital stays. Click to read the full story.

Microbubbles Could Help Bowel Cancer Patients Avoid Life-changing Surgeries

By injecting microscopic bubbles of a safe gas into the bloodstream of bowel cancer patients, the researchers believe ultrasound could be used by surgeons in the future to identify which areas of tissue the cancer has spread to reports Medical Xpress. This method minimizes removal of healthy tissue and reduces the extent of bowel surgery. Reducing the extent of bowel removed decreases the risk of complications such as a stoma after treatment. These microbubbles have a safe gas inside a shell of fat that is like human cells. The bubbles are injected into the bloodstream and ultrasound waves are used on the patient. When the bubbles meet the sound waves, they expand and reflect more ultrasound energy back to the scanner causing a more accurate image. The researchers can see which lymph nodes have cancer and which do not. This method is already successfully used in cardiac and liver patients. Click to read the full story.

How To Participate in Cause Awareness Days: A Step-by-Step Guide For Patient Advocates

/in /by
Bookmark (0)

No account yet? Register

Taking part in cause awareness days can be a great way to get your message out. Cause awareness days are specific days (or weeks/months) dedicated to raising awareness and educating the public about a particular cause. People and organizations get to join together, use their collective voices, and make a difference.

In this step-by-step guide, I’ll show you how to participate in cause awareness days more effectively to make a meaningful impact on behalf of your community.

Step 1: Identify relevant cause awareness days

Research and make a list of cause awareness days related to your disease or condition. This information can be found online and through patient advocacy groups. Several websites provide calendars of awareness days, such as the National Health Observances calendar maintained by the US Department of Health and Human Services and PEN’s Cancer Awareness Calendar 2023.

Tip: Don’t limit yourself to disease-specific awareness days. There are many ways to expand your advocacy efforts and engage a wider audience, for example, during days such as World Mental Health Day, International Women’s Day, and World Sleep Day.

Step 2: Plan your strategy

Decide how you will participate in each cause awareness day. Think about different ways you can make an impact, such as sharing educational resources, personal stories, or statistics, hosting fundraising events, speaking engagements, and conducting community outreach. Create a calendar to track your activities and stay organized.

Step 3: Create your content

Make your content engaging by following these tips:

  • Use graphics, videos, or infographics to make your content more visually appealing and engaging. Be sure to use high-quality images and videos that are relevant to your cause. 
  • Keep it concise. Attention spans are short, so keep your content short and to the point. Use bullet points and headers to break up text and make it easier to read.
  • Be sure to fact-check your content and cite credible sources. Misinformation can damage your credibility and harm your cause.
  • Tell a story. Stories are powerful tools for creating emotional connections with your audience. Share personal stories or anecdotes that help illustrate the impact of your cause.
  • Provide actionable steps. Your content should inspire your audience to take action. Provide actionable next steps to get involved or support your cause.

Step 4: Spread the word

A crucial part of raising awareness is spreading the word. To share your content effectively, follow these tips:

  • Share your content on your social media channels, and use hashtags to increase visibility. 
  • Email is still an effective way to communicate with your audience. If you have a list of email subscribers, share your content with them and encourage them to share it with their networks.
  • Collaborate with other patient advocates, organizations, or influencers who are participating in the cause awareness day. This can help amplify your activities and increase the reach of your message.
  • Reach out to local media outlets to share your story. Pitch a story to a reporter or submit a press release to local news outlets.
  • If you have a budget, consider using paid advertising to reach a more targeted audience. 

Step 5: Participate on the day

On the day participate in the activities you have planned. Don’t forget to use relevant hashtags and tag other organizations or individuals who are also participating. Be sure to respond to comments, messages, and mentions on social media. This can help build relationships and trust with your audience. 

Step 6: Follow up

This final step is often overlooked. However, to my mind, it’s one of the most valuable aspects of participating in cause awareness days. This is because it helps to build a community of advocates who are passionate about the cause and can support each other in their efforts.

Here are some ideas to follow up and build on the momentum of the day:

  • Send a message to those who participated in your activities and thank them for their support. Let them know how much their support means to you and to the cause.
  • Share the number of people you have reached with your online activities, your engagement rate, and other relevant metrics to demonstrate the impact of your combined efforts. 
  • Stay connected with those who participated in your activities and build relationships with them. Follow up with them throughout the year and invite them to participate in future activities.

Participating in cause awareness days is a powerful way for patient advocates to bring attention to critical issues that affect their communities, inspire change, and motivate others to join them. Yes, it takes planning and time, but the effort you put in is worthwhile when it contributes to the creation of a movement of passionate advocates that are committed to the same cause.

Negotiating Debt, Managing Your Finances and Gaining Financial Security

/in , /by
Bookmark (0)

No account yet? Register

Debt can be crushing. It can cause people to delay marriages, purchasing of a home and even decline or delay needed medical treatment. In fact, one of the leading causes of bankruptcy is medical debt. Many people are unaware that they can negotiate their debt with many creditors, It pays to be aware of the options you may have. I’m going to review some of these negotiation options with you. This list is not exhaustive. If you have bills that you’re having a hard time managing, don’t be afraid to ask your creditor. Understand how debt default can affect your credit and can lead to legal action including the seizure of property. Don’t let this happen to you.

Tax Debt

If you have outstanding debt with the IRS, talk to them. It’s important to understand that interest and penalties will continue to accrue on any outstanding balances. The sooner you speak to them the better off you’ll be. You may not be able to completely eliminate your debt, but you may be able to get it reduced or set up payment arrangements that will make it more manageable. Most creditors, from the mortgage company to hospitals to loan companies are willing to discuss your situation. For many people who delayed or did not file a 2021 tax return, penalties can accrue at a 5% rate of the unpaid taxes for every month until reaching a 25% cap. Additionally, interest will compound daily at a current rate of 7%. This interest rate may go higher if the Federal Reserve raises rates. There is also a late filing payment penalty of .05% of the unpaid taxes, an amount that accrues monthly. You can see how your outstanding debt can increase significantly. Unpaid taxes can lead to garnishment of wages, money can be taken from checking and savings accounts and the IRS can seize real estate and vehicles.  

If you owe delinquent taxes, contact the IRS and set up a payment plan. If you don’t have the income or resources to pay taxes, taxpayers can apply for an “offer in compromise,” which can reduce the overall tax liability. Another option is to ask the IRS to report the debt as currently not collectable. This will temporarily suspend certain collection actions such as seizure of property. This action does not erase debt and it will also continue to accrue interest. I would caution taxpayers to be aware of scammers that say they offer assistance with the IRS. Do your due diligence 

The collection process and penalties assessed vary greatly depending on circumstances. Many people are unaware that if you live in a federally declared disaster area or are a member of the military serving in a combat zone, exceptions can be made. 

Mortgage Debt

Many people remember the many homeowners that found themselves upside down on their mortgages in 2008-2009. Consequently, many lost their homes, 

According to the New York Federal Reserve Board, in the last quarter, 0.57% of all mortgages were seriously delinquent. There is a concern that with the rising interest rates along with the higher house payments, delinquency levels may rise in the coming years. Homeowners who are significantly behind in their mortgage payments should contact their mortgage servicer immediately. Describe your situation and how you plan to repay what is owed. Missing mortgage payments will hurt your credit score, so consider asking your loan services for a loan forbearance, which will pause or reduce your mortgage payments. The missed payments which are due at the end of the term will include interest during the forbearance period. You can also ask for a payment plan arrangement. Also, some portage servicers will offer a payment deferment in which the missed payments are added to the end of the home loan. The homeowner must be aware that if the mortgage debt continues to accrue, the loan servicer may push the homeowner to sell the property. 

Credit-card Debt

In an environment where interest rates are rising, credit card holders can find themselves in trouble when their purchases and interest charges snowball to the point where they can’t make the minimum payments. It may pay to seek help from the National Foundation for Credit Counseling. It is a collection of non-profit member agencies that help consumers develop a plan to both reduce their living expenses and pay outstanding debts. The counselors work with your credit card company to make the payments more affordable. The payments are made to the agency which disperses the money to the creditors. The credit card companies may vary in their assistance. Consumers will need to provide documentation of the extenuating circumstances that led to the debt. You can also reach the credit card company yourself and save money on fees and negotiate with them directly.

Student-Loan Debt

Many older people are finding that they’re holding student debt for adult children. Also, student loan holders find themselves in limbo waiting for the supreme court to rule on the legality of President Biden’s plan to forgive up to $10,000 per person in federal loans and up to $20,000 in federal loans to borrowers who also received Pell Grants. Borrowers can assess whether their monthly payments are still manageable once the pause ends. If not, contact the loan services and inquire about deferment and/or forbearance options, as well as other repayment plans. 

Medical Debt

Almost a quarter of all US adults say they have past due medical bills including bills they cannot afford to pay, according to the Kaiser Family Foundation. There are options to help manage the burden of medical debt. One of the first things a person can do is prepare for the cost of a procedure. Ask about the cost as soon as possible. Also make sure you understand your insurance and what it will and will not pay. Thirdly, make sure your medical bills are accurate. Upwards of 80% of medical bills are incorrect. Don’t pay a bill unless you have verified the itemized expenses with the Evidence of Benefit statement. If there are errors you can file an appeal. Many hospitals have charitable programs to help patients cover medical bills. They can also help you establish a payment plan to pay your outstanding bills. You can ask if the bill can be reduced to an amount you can pay. It doesn’t hurt to ask. Be prepared to provide documentation, such as proof of income, insurance, disability and even your proximity to the facility if travel expenses are significant.  

Patients can apply for grants through the Patient Advocate Foundation and other non-profit organizations. Funding comes mostly from private donations and health-related nonprofits devoted to specific ailments, such as the Leukemia and Lymphoma Foundation. 

Some healthcare providers offer medical credit cards to their clients. They come with no or low interest introductory rates that will later reset to a high rate. Consumers should be aware that these rates may be higher than that of regular credit card rates. It pays to take this into consideration before signing on the dotted line.  

 

Don’t be afraid to ask for help with any of your creditors. Getting control of your finances will reduce financial stress and allow you to focus on more important things in life.  

March 2023 Notable News

/in , /by
Bookmark (0)

No account yet? Register

March highlights the daily discoveries that are having a big impact on cancer treatment. Scientists have discovered ecDNA, a genetic material outside of chromosomes, that may lead to a new way to treat cancer. A geriatrician has developed an assessment tool to help doctors to choose more individualized cancer treatments. A new urine cancer test makes it easier for everyone to have access to cancer screening, even outside of the doctor’s office. Each day presents new opportunities for fighting the war on cancer.

Breakthrough ecDNA Discovery Could Revolutionize Cancer Research

A multi-disciplinary team of researchers has pinpointed the major role played by extrachromosomal DNA in the evolution of carcinogenic diseases. This kind of “external” oncogenes make cancer drug-resistance, and it could become one of the main targets for new and effective treatments in the future reports Tech Spot. This ecDNA is a piece of genetic material found outside of chromosomes in human cells. Genetic material outside of cells can be a sign of cancer. Researchers have found ecDNA’s role is to cause the cancer to spread rapidly, create tumors that are drug resistant, and can cause a relapse of the cancer. Oncogenes can hide in ecDNA for a period of time before becoming active again. Scientists are now using this knowledge to look at fighting cancer in a different way. Click to read the full story.

A Different Approach to Treating Cancer

Age is by far the biggest risk factor for getting cancer and it is the main factor in determining treatment options. Older patients are not all the same when it comes to activity and general health. There are patients in their 80’s that are healthier than some patients in their 60’s. Geriatrician Wiliam Dale’s team created a multi-dimensional assessment tool that looks at each patient’s physical and functional health reports WINK NEWS. The parameters of this tool look at patient nutrition, sleep, and mental health; focusing on the individual needs of the patient. The results of this new assessment have made for better outcomes for cancer patients. They experienced less chemotherapy toxicity, less nausea, and had better blood counts. The findings also showed that patients with hearing loss were at more risk for complications due to not hearing physician instructions clearly. Click to read the full story.

New Cancer Screening Urine Test has 99 Percent Accuracy Rate

Researchers from the Surface & Nano Materials Division of the Korea Institute of Materials Science recently developed a strip-type urine sensor capable of amplifying the light signal of metabolites in urine to diagnose cancer reports MITech News. The urine test needs no other analysis, making it simple to use outside of the hospital or doctor’s office. Cancer cells release metabolites, using a light scattering technique on the test strip, cancer can be detected using a small amount of urine. This test can detect cancer in various stages with 99% accuracy. It is a less invasive screening test, and the results can be used to get the patient to the doctor for further testing. Early screening for cancer allows for earlier treatment, making better patient outcomes. Click to read the full story.

The Power of Shared-Decision Making: A New Revolution of Care

/in , /by
Bookmark (0)

No account yet? Register

I remember my treating surgeon discussing my treatment options with me when I was first diagnosed with cancer back in 2017 at the age of 27. I didn’t know much about thyroid cancer, what a thyroid was, or about cancer itself. Of course, no one plans to get cancer in the first place, especially at a young age, so I felt like I was being guided by my care team appropriately. I believed in the “power” of the white coat, a doctor who knew I had my best interest at heart. What I didn’t know was about different options when it came to treating my type of cancer, which my doctor explained to me in terms that I understood. I didn’t know it at the time, but my doctor was engaging in what’s called “shared-decision making,” when the patient and their care team, including their doctor, take the time to talk about different options and how it will affect the life of the patient moving forward. 

To give an example, I was given the option of removing the half of the thyroid that contained the tumor and leaving the other half in, as opposed to removing the entire gland. My doctor explained the pros and cons of both types of surgeries so that I could make a well-informed decision with my caregivers, and as a result, I felt like a more prepared patient. 

From this experience, I learned how important it is to have a good relationship with your entire care team, especially with your treating physician, such as an oncologist, or in my case, a surgeon and endocrinologist. Having an ongoing back and forth conversation that fuels this type of relationship is especially important, too, as I believe it can directly impact patient compliance. For example, as part of ongoing surveillance for my diagnosis, and typically for any cancer diagnosis, ultrasounds and bloodwork are performed on a routine basis, such as every 3-6 months, or even yearly. If a patient doesn’t know why this is being done, they may forgo either of these types of appointments, especially if they’re expensive.

Another example of patient compliance is compliance to medication instructions. Doctors and patients alike should have a conversation about how these medications are to be taken, especially if the medications are newly prescribed. Often patients are labeled as “non-compliant,” but more likely than not, they don’t understand. This is where communication, a strong relationship, and shared decision making come in to enhance patient outcomes. 

As patients, we have to be advocates for ourselves when it comes to our health, which also involves our care team involving us in our own healthcare. We should feel emboldened to do this, not afraid. If you don’t feel comfortable discussing your treatment and your opinions with your physician and care team, then it’s time to find another group, and that’s 100% okay. Be your own empowered patient! 

#patientchat Highlights – Self-Advocacy and Self-Education

/in , , /by
Bookmark (1)

No account yet? Register

Last week we hosted a “Self-Advocacy and Self-Education” Empowered #patientchat on Twitter. Take a look at the top tweets and full transcript from the chat.

Top Tweets

Can you recall a time where advocating for yourself improved your care?

Tweet from Alan Brewington

How can you become an effective self-advocate?

 

Full Transcript

Hospital Charity Programs: What You Need to Know

/in , /by
Bookmark (1)

No account yet? Register

Understanding Hospital Charity Programs

Many of you may be aware that some laws have changed regarding reporting of medical debt to credit agencies. Those new laws are most favorable to individuals. Particularly for those patients who have frequent doctor visits and accrue numerous bills. However, it is most surprising to me that many patients are not aware of the many programs that can help them pay for medical care that they have amassed. Here is the low-down on what you need to know in order to access these charitable funds if you are going to a non-profit or a for-profit hospital for your care. 

What is a Hospital Charitable Program and How can you access it?

According to the IRS, Non-Profit hospitals or NFP’s are those hospitals that are not required to pay property-tax, state or federal income tax, or sales tax. Non-profit hospitals account for nearly 58% or three fifths of community hospitals and provide charity programs. Parameters are set by federal regulation in addition to charity-care policies that are set up by individual hospitals. The policies set up by individual hospitals can vary in terms of eligibility criteria, application procedures, and the level of charity provided. Hospitals bear the direct costs of providing charity care, support from donors and federal, state, and local governments may cover some or even all of these expenses.  

In exchange for tax-free status, nonprofit hospitals are expected and required to distribute any additional capital back into their surrounding communities. Because of this, non-profit hospitals face additional scrutiny by healthcare policymakers concerned as to whether and how the facilities are following through and contributing to their communities in a meaningful way to justify the tax exemptions that they are receiving. They question how the funds in the communities are being spent. 

You should know the type of  facility you are visiting. Don’t be afraid to ask. Find out about their charity and community programs. Many states have required that this information be readily available to patients. Unfortunately this isn’t always the case. Ask for a copy of their charity plans and how to access it. Get names and the phone number of people who manage it.  

For-profit hospitals are investor-owned. These facilities aim to make profits for their shareholders. Some of the largest for-profit hospital chains in the U.S. include Hospital Corporation of America,And HealthSouth. Not surprisingly, for-profit hospitals are generally among the highest-billing hospitals in the country.  

How do they compare?

Day to day functions look very much the same between the two types of organizations One very distinct difference however, is that for-profit hospitals typically use considerable portions of their available budget for marketing and advertising initiatives, as compared to non-profit facilities. For-profit hospitals tend to serve lower income populations while nonprofit hospitals are generally found in communities with higher average incomes and fewer under and uninsured patients.  

Consequently, nonprofit hospitals maintain higher bad-debt to net patient revenue ratios than for profits, although for profits with the highest bad debt to net patient revenue ratios tend to maintain higher ratios than nonprofit facilities. 

A study done in 2020 found that nonprofit and for-profit hospitals provide similar levels of charity care-another type of uncompensated care-when examined as a percentage of total debt. 

The Internal Revenue Service defines charity care or financial assistance, as “free or discounted health services provided to persons who meet the organization’s eligibility criteria for financial assistance and are unable to pay for all or a portion of the services provided”. In some cases depending on their criteria hospitals may provide charity care to both uninsured and insured patients.  

Who is eligible for hospital charity care?

Hospitals have a lot of flexibility to establish their own criteria for charity care. For instance, one analysis of a large sample of nonprofit hospitals that used the Federal Poverty Level to determine eligibility for free care in 2018, found that about one in three (32%) of the hospitals required patients to have incomes at or below 200%  the FPL or imposed more restrictive eligibility criteria, while the remaining sample (68%) relied on higher income caps. For discounted care, (62%) of nonprofit hospitals in the study limited eligibility to patients with incomes at or below 400% FPL or used lower income levels. The remaining (38%) rely on higher income caps. 

The conditions that hospitals put on the free or discounted care can vary. Patients may need to have few assets or must live in hospital service areas. Other criteria may also become  determining factors for free or reduced care.   

Unfortunately, from my experience, all patients are not getting access to this free reduced care because the information is not readily available or they don’t know that they may be eligible. For example, non-profit hospitals have estimated that  of the bad debt they reported in 019 reflecting 2017 expenses or earlier, about $2.7 billion came from patients who were likely eligible for charity care but did not receive it. Now it would be interesting to see how this picture has changed post COVID. These numbers are rough estimates coming from unaudited hospital reports and do not account for all facilities or for patients who qualified for charity care but still paid their bills.  

Patients have a right to know the cost of care and where they can get help if they qualify. Don’t hesitate to ask what’s available at your care facility. Ask prior to services and after services are provided. Fill out your required documentation and do so in a timely manner. Be empowered to better your physical and financial health. 

True Patient Empowerment: Bridging the Myeloma Patient and Expert Voice

/in , , , , , , , , /by
Bookmark (1)

No account yet? Register

Multiple myeloma can sometimes feel overwhelming and complicated, but what can patients and care partners do to help improve their care? With this question in mind, the Patient Empowerment Network initiated the START HERE Myeloma program, which aims to bridge the myeloma patient and expert voice to build empowerment. 

Myeloma patient and expert

START HERE Myeloma Program Resources

The program series includes the following resources:

Patient-Expert Q&A Webinar Topics and Key Takeaways

In the PatientExpert Q&A webinar, renowned multiple myeloma expert Dr. Sikander Ailawadhi from the Mayo Clinic shares his expert knowledge to help patients and care partners fortify their knowledge and confidence, while myeloma patient and Empowerment Lead Lisa Hatfield moderates the discussion and shares some of her views as a patient. Dr. Ailawadhi and Lisa provided some in-depth discussion along with key takeaways. Some of the discussion covered:

Among some key points, Lisa shared her perspective about seeing a myeloma specialist, “There is great importance in seeking out the expertise of a myeloma specialist, even if it’s just when you’re newly diagnosed, going for a consult once and then maybe upon relapse going again, if you don’t live near it, a specialist, seeking out the expertise of a specialist is really critical.”

Dr. Ailawadhi provided his expert perspective about recent developments in multiple myeloma research and treatments. “Myeloma treatment is going through a change where immunotherapy and harnessing the body’s own immune system is becoming extremely important. And when we do that, the immunotherapy is typically very targeted, so what these drugs these agents, these terms, this alphabet soup is doing is it is targeting specific markers on the myeloma cell on the plasma cell.” 

Dr. Ailawadhi also shared his excitement about the future of  myeloma care. “So why is this important for everybody, whether they are newly diagnosed or relapsed or long-term survivor with myeloma, because this tells you that not only are we getting newer drugs in the same classes, we are also getting brand new classes of drugs. And you can imagine that means that those brand new strategies are ways to target the plasma cell, we know cancer cells are smart, and they develop invasive mechanisms to become resistant to drugs. But every time something gets resistant if we have a brand new mechanism to go against the disease, but that’s exciting because that’s why we are seeing deeper responses, even in very heavily pre-treated patients, because we are using newer specific, relatively safe, convenient strategies to going after the plasma cell.”

Dr. Ailawadhi has also been very involved in researching and working to improve healthcare disparities, and he shared some of this knowledge during the webinar. “Kidney dysfunction can be seen in as much as 20 percent of patients at the time of diagnosis, and there are a significant number of patients who would have kidney dysfunction even as they go on with their myeloma journey. I’m interested in these healthcare disparities. I just want to point out that patients who are African Americans do tend to have a much higher incidence of kidney dysfunction and need for kidney dialysis with myeloma at the time of diagnosis or even with treatment.” 

Man using a tablet

Some program participants provided valuable testimonials about the START HERE Myeloma Patient-Expert Q&A webinar. 

  •   “I have been a myeloma patient for 8 years. This was one of the best webinars I have listened to. The speaker was excellent and the questions presented were great! Thank you for a wonderful session!”
  •   “This program was well thought out and I felt like Lisa was reading my mind! Super job. It makes living with a serious condition a little less scary when you see so many people have the same questions as you.”
  •   “Thanks for a great discussion. It felt like it wasn’t a lecture, but a conversation. Lisa is an inspiration to our support group members in South Carolina. We will be sharing this when we meet next week.”

We hope you can use these valuable multiple myeloma resources to build your knowledge and confidence toward becoming a more empowered patient or care partner.

30-Year Acute Myeloid Leukemia Survivor Shares His Journey

/in , , , , , , /by
Bookmark (0)

No account yet? Register

30-Year Acute Myeloid Leukemia Survivor Shares His Journey from Patient Empowerment Network on Vimeo.

What might acute myeloid leukemia (AML) patients experience for symptoms, treatment, and coping with AML? AML patient and Empowerment Lead Art Flatau shares the experience of his AML journey from diagnosis, through treatment and AML survival, and advancements in AML treatments.

Art also shares his empowerment advice for patients and care partners to ensure optimal care and how he has found a sense of purpose in patient advocacy efforts.

[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:

My name is Art, and I live in Austin, Texas. In 1992, I was 31 and married with two young children. I was in graduate school and working full-time. For a couple weeks, I had been feeling tired and had been running a low-grade fever. I also had a lot of bruises, probably because I was playing rugby at the time. I thought the fatigue was because I was overworked and getting  too little sleep.

On Saturday, I had a rugby game but was too tired to play more than a few minutes. The next day, I was too tired to do much. My wife and I decided that I would go to the doctor on Monday. 

Monday morning, I woke, and there was blood on my pillow as my gums were bleeding. My wife wanted to take me to the ER, but I convinced her to just call our doctor. I went to the doctor later that morning. She noted my symptoms, did a quick exam, and sent me for blood work. After lunch, she called and said I needed to go to the hospital and see a hematologist. I knew I was in trouble.

We talked to the doctor and he said, “We have to see what kind of leukemia you have.” What a shock.  I knew that I was sick with something I had not had before. The fact that it was cancer was a shock. I didn’t know that there were different types of leukemia but soon found out that I had acute myeloid leukemia (AML).

That evening, I received platelets and red blood transfusions. The next morning, I had a bone marrow biopsy, more platelets, and surgery to put in a central line. That afternoon, less than 24 hours after hearing the word leukemia in reference to me, I started chemotherapy. This was all overwhelming. We had no way to understand what our options were or to get a second opinion.

Three-and-a-half weeks later, I got out of the hospital with no hair, 25 pounds lighter, a lot weaker but alive. I had more chemotherapy in the next few weeks and more hospitalizations. A few months later, I was finished with chemo. I regained some strength, regrew my hair, and tried to get my life back to normal.

In early 1993, about 9 months after being diagnosed, we got another shock, I had relapsed. I needed to have a bone marrow transplant. Although we had a little time, a few days to figure out where to go for a transplant, we were again struggling to understand the process. We were also struggling to figure out how to move to Dallas for three more months for the transplant. The transplant was a long grind, a month or so in the hospital, a couple of months of going to the outpatient clinic two to three times a week, but we made it through. 

Now, 30 years later, I’m still around. My children graduated from high school, college, and graduate school and have successful careers. My wife and I are empty-nesters.  I am still working but hoping to retire in a few years. Although I consider myself very lucky to have survived and have had relatively few side effects, I do have some side effects to deal with, including low testosterone.

Some things that I’ve learned during my AML journey include: 

  • AML is a rare disease: The good news is that over the last several years a lot of new treatments have been discovered for AML. These new treatments are leading to more people surviving AML. However, these new treatments are evolving rapidly. It is important to find a cancer center and doctors who treat a lot of patients with leukemia. 
  • Consider volunteering: Advocacy work is an excellent way to help yourself and to support other patients and continued research efforts.
  • If something doesn’t feel right with your health, advocate for yourself and ask for further testing.

These actions (for me) are key to staying on my path to empowerment.

Becoming an Empowered and [ACT]IVATED AML Patient

/in , , , , , , , , , /by
Bookmark (0)

No account yet? Register

Patient Empowerment Network (PEN) is committed to helping educate and empower patients and care partners in the acute myeloid leukemia (AML) community. AML is shown to impact younger patients compared to other types of blood cancer. In addition, there are some marginalized communities of Black and Latinx AML patients that experience disparities in health outcomes. Recent studies in AML have shown higher mortality rates and higher rates of AML recurrence in Black and Latinx patient groups. PEN aims to help empower patients in their care. With this goal in mind, we kicked off the [ACT]IVATED AML program, which aims to inform, empower, and engage patients to stay abreast of the latest in AML care.

Disparities in AML Treatment and Health Outcomes

AML research studies show that Black and Latinx patients experience disparities in AML treatment and health outcomes. Some of the study findings include:

A recent study in Blood Advances showed that Black adolescent and young adult (AYA) patients with AML have higher mortality rates and higher rates of AML recurrence in comparison to white patients. The study compared clinical outcomes between 1983 and 2016 for AYA patients between the ages of 18 and 29. The early mortality rate of Black AYA patients was 16 percent compared to 3 percent for white AYA patients. When examining complete AML remission rates, 66 percent of Black AYA patients experienced complete remission compared to 83 percent of white AYA patients. The authors of the study looked at the research data and determined that delayed diagnosis and treatment in the Black AYA patients as well as genetic differences of AML likely led to the higher mortality rate for this group. In comparison, Black and white patients between the ages of 30 and 39 showed no significant differences in their survival rates.

Lead study author Dr. Karilyn Larkin, a hematologist at the OSUCCC – James, shared, “To our knowledge, this is the first study to examine how molecular genetic alterations contribute to outcomes in young Black people with AML compared with their white counterparts.” Study of genetics is extremely vital in developing new and refined AML treatments, and this is why it’s more important than ever for more Black AYA patients to join clinical trials to create a larger pool of participants to learn from.

Another recent study in Blood showed that Hispanic/Latinx and Black AML patients have higher mortality rates in comparison to white AML patients. The study analyzed several factors in the disparities including health care access, tumor biology, treatment patterns, ICU admission during induction chemotherapy, comorbidities, and structural racism. Neighborhood measures of structural racism were found to be a major predictor of AML mortality rates. The neighborhood measures that were tracked in the study included census tract disadvantage, segregation, and affluence. The study authors concluded that more research must be done to learn the ways that structural racism relates with different AML treatment and predictive factors to impact health outcomes. Then more actions can be taken to help decrease the health disparities for these patient groups.

[ACT]IVATED AML Patient and Expert Tips

Black and Latinx patients who more frequently experience AML disparities are key groups for patient advocacy and empowerment. AML specialists, patients, and patient advocates have pooled some valuable advice through their experiences in treating and living with AML with the goal of improving care for all AML patients. PEN has been fortunate to receive some tips from patient and AML Empowerment Lead Sasha Tanori and AML specialists Dr. Catherine Lai and Dr. Naval Daver toward patient activation and empowerment.

Sasha talked about her AML experience as a Mexican American and the delay in her diagnosis. “You didn’t go out and seek care if you are hurt, you just sucked it up, you went to work, you went to school, you did your job, you took care of your family, and that was it. If you had any type of ailments or illness, you would just rub some Vaseline and do the sana sana and just move on about your day.”

Sasha’s care in a rural healthcare setting also contributed to the delay in her diagnosis. “In my local town they had no clue what was wrong, they didn’t know it was cancer, they didn’t know what was going on. They just kept doing tests after tests after tests, and they’re on blood work, and finally, they were just like, ‘We have no clue, we’ve got to send you somewhere else. You’ve got to get in an ambulance and leave.’”

Dr. Lai and Dr. Daver Tips

Dr. Lai advises patients to take proactive actions in their care. “Ask your physician and your oncologist when you’re talking with them about what all the newest therapies are and what would be specifically the best treatment for their specific leukemia with respect to the different mutations.”

Testing has become a key factor in optimizing treatment for each patient’s specific AML. Dr. Daver also stresses the importance of testing. “Patients, when they transformed what we call secondary AML or MDS, seemed to have a higher predilection for certain high-risk communications such as TP53, and these are best treated with ongoing frontline clinical trials at large academic centers.”

Dr. Daver also explained the importance of genetic mutations currently under study in combination clinical trials. “Patients should be checked for arrangements like MLL rearrangement NPM1 mutation, new fusions as these may be amenable to therapy with the menin inhibitors, there are multiple trials with five different menin inhibitors, single agent trials and also combination trials now ongoing across multiple centers both in the U.S. and ex-U.S.”

The future of AML care is full of hope, and Dr. Lai shared her perspective. “There are a lot of new, exciting therapies that are coming out, and that it’s really novel sequencing strategies and combinations that I think will be the future of AML.”

Clinical trial participation continues its vital role in improving AML care, and Dr. Daver took the opportunity to stress the importance of trials. “Clinical trials are critical, both for the patients themselves to get access to what we call tomorrow’s medicine today as well as potentially to help move the entire field forward.”

[ACT]IVATED AML Program Resources

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

  • [ACT]IVATED Expert Interviews with experts Dr. Catherine Lai and Dr. Naval Daver moderated by an AML patient
  • [ACT]IVATED Resource Guide  (en Espanol here)  a downloadable, printable support resource packed with a newly diagnosed patient checklist, expert tips, AML facts, AML mutations, cytogenetic abnormalities, and support resources
  • [ACT]IVATED Patient Vignettes to learn valuable experiences and lessons learned from other AML patients
  • [ACT]IVATED Activity Guide – a downloadable, printable support resource packed with information and activities to educate, empower, and support AML patients and care partners in their journeys through care

Though the underrepresented AML groups of Black and Latinx patients have experienced health and care disparities, experts and patient advocates are taking action to improve care for all. By shining the light on gaps in care, PEN aims to aid in reducing these gaps along with continued research advances and clinical trial participation. AML patients can educate and empower themselves to become more confident and active partners in their care. By doing so, they can make more informed decisions for improved health outcomes. We hope you can continue to use the [ACT]IVATED AML program resources to advance your path to becoming an informed, empowered, and engaged patient. 

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

/in /by
Bookmark (1)

No account yet? Register

Staying current with healthcare news is essential for patient advocates. However, the sheer volume of information available can be overwhelming.  It can be challenging to sift through all the noise to find the most relevant and important news.

A healthcare newsletter or roundup can be really helpful here. Resources like these curate the most relevant and impactful healthcare news, usually by topic. They can help your readers stay informed about the latest scientific breakthroughs, research, and policy developments without having to spend hours scouring the internet for information.

With a well-crafted news roundup, you can build trust and credibility within your community, while also positioning yourself as a reliable source of healthcare news. In this post, I’ll share some best practices for creating a regular roundup of healthcare news that educates, informs, and inspires your readers.

1. Gather Your News

Before creating your roundup, you first need to gather the news. Throughout the week, make a note of healthcare stories you come across. It could be breaking news, new research, or policy changes. You can subscribe to Google Alerts to get notified when new articles are published on a specific topic.

2. Prioritize the Most Impactful Stories

With so much information available, it’s essential to be selective and focus on the most significant news stories. Pick three to five stories that are most relevant to your audience. It goes without saying that you should get your news from reputable sources. Whenever you use a source, evaluate it critically to make sure it’s reliable.

Carolyn Thomas, women’s health advocate and author at myheartsisters.org  shares this helpful tip:

“A specific online resource I regularly use is Retraction Watch, a site launched in 2010 under the auspices of the Centre for Scientific Integrity. RW has so far reported almost 25,000 scientific papers that have been retracted by journal editors – the majority due to authors’ scientific misconduct”.  Because I frequently cite emerging medical research and/or authors, it’s important to double-check that the studies have not been retracted, nor their authors discredited.”

3. Write a Summary

A concise summary explains what the story is about and why it matters. It should highlight the key points of each news item while providing context for people who are unfamiliar with it. In addition to statistics and quotes, summaries can include relevant quotes from experts and officials.

4. Categorize Based on Topic

Make it easier for readers to navigate your content by grouping news items by topic. Some common categories for healthcare news roundups are medical research, policy changes, technological advancements, and public health updates.

5. Stick To A Standard Format

Your roundup will be easier to navigate if you follow a standard structure. This can include including a headline, a concise summary, and a link to the original article for each story. By using a uniform layout, your readers will quickly become accustomed to your roundup’s format, making it more accessible and easier to digest

6. Link To The Original Source

Make sure to link to the original source of your news item. Readers can click on the links to read the full article if they want to know more. Seeing where the information comes from allows readers to assess the credibility of the source for themselves, so the roundup is transparent and credible. Don’t forget to check the links and make sure they go to relevant articles.

7. Set a Regular Publishing Schedule

Establish a regular publishing schedule for your roundup, such as weekly or bi-weekly. In this way, your readers will know when to expect your round-up and know they’re getting the most current information.

8. Include Visuals

Adding images to your roundup can make it more visually appealing and engaging. Select high-quality images that add value and are relevant to your content. Infographics and charts can be particularly effective at presenting statistical information, while video interviews can provide additional context. Additionally, visuals can increase the shareability of your content on social media platforms, helping to expand your reach and engagement with your audience.

9. Share On A Variety Of Platforms

Sharing your roundup on a variety of platforms is an effective way to reach a wider audience and increase engagement. Aside from promoting it on social media, post it on healthcare forums or discussion boards.  Additionally, consider sending it out in a newsletter or email blast to your subscribers.

10. Follow Up On Important Stories

Healthcare is a field that’s constantly evolving, so new developments can happen at any time. By following up on important stories, readers know they will get the most relevant and up-to-date information from you. When following up on stories, it’s important to provide context for readers who may not have read the previous roundup and to link back to any relevant content.

11. Encourage Reader Engagement

Create a sense of community by encouraging readers to leave comments and share their thoughts. You can do this by asking readers to share their thoughts, opinions, and experiences at the end of the round-up. It is also good to keep an eye on comments and respond so that a discussion can be facilitated and questions can be answered. Also, include social media share buttons on the post so readers can share it with their friends, increasing engagement and visibility. By encouraging reader engagement, you can create a more dynamic and interactive healthcare news roundup that is more likely to be shared and talked about.

12. Establishing Trust Through Consistency

This last tip comes from Terri Coutee, founder of DiepCFoundation.org, a non-profit organization that focuses on providing education, research, and support for patients who have undergone breast reconstruction surgery using DIEP flap procedures.

“Patient advocates often take on the role of curating content for a particular community. It is important to establish trust within a community by reporting consistently and with care and integrity. When you express interest in keeping a community updated on the latest evidence-based information, they count on you and look for new content. It is important to report accurately while at the same time understanding your reader and weaving skills of caring and compassion into your content. Establishing trust through consistency brings access to articles and information others may not seek on their own. You become their source of trusted information.”

By following the tips and best practices outlined in this post, you can curate the most relevant and impactful news stories while providing valuable context and insights for your readers. Your efforts will not only keep your audience informed and educated but also demonstrate your dedication and commitment to patient advocacy.

Patient Profile: Eva Grayzel

/in , , /by
Bookmark (0)

No account yet? Register

When stage IV squamous cell carcinoma survivor Eva Grayzel shares her story, you can tell that she has a zeal for life. She survived  oral cancer and works as a performance artist and speaker. Diagnosed at age 33, she was told that she had a 15 percent chance of survival. Eva’s journey started with a sore on the side of her tongue that wouldn’t resolve .

About eight weeks after noticing the sore, Eva saw an oral surgeon who examined her tongue. She complained about the pain, and her oral surgeon said, “if it bothers you so much, we can take it off.” She agreed. Two days later, Eva felt fine, and two weeks later, she received an assuring call from the surgeon’s office to inform her that her biopsy was negative. She was confused and wondered if there was a mistake of some sort. “I literally thought, ‘What on earth could they be looking for in a biopsy of the tongue?’ The receptionist told Eva she had nothing to worry about. Two years passed, and she had no obvious symptoms. But early stage oral cancer often goes without symptoms. Two years later, another sore developed on her tongue over the previous biopsy site. 

Eva returned to the doctor after eight weeks, and they diagnosed her with hyperkeratosis, which is basically a callus. “They treated me for trauma for nine months; they had my teeth shaved down; they gave me gels and rinses. It was a nightmare.” Her doctors also told her that the amount of speaking in her work exacerbated her symptoms, and she regrets that she didn’t know more about oral cancer at that time. Eventually, a second opinion brought her the correct diagnosis of squamous cell carcinoma, which was treated with surgery and radiation and followed up with reconstructive surgeries.

Throughout her cancer journey, Eva has endured a lot. She had one-third of her tongue removed, a partial tongue reconstruction from arm and leg tissue, a modified radical neck dissection, and a maximum dose of radiation therapy. “It was most definitely the hardest thing I’ve ever been through during treatment. I planned my funeral and didn’t think I was going to survive.” Through an extraordinarily successful treatment plan, Eva not only survived but also regained her ability to speak clearly. With a second chance at life, she couldn’t let the same thing happen to someone else.

Radiation to the head and neck is the most difficult part of the body to tolerate therapy. “What I learned is that you’re stronger than you think you are. You have more strength than you know you do. I really didn’t think I could get through this, and somehow I pulled through.”

Eva has learned some things and has some advice for survivors. “There’s always hope, and hope is different to different people. For some it might be no pain, for others it might be living six months to make it to their kid’s graduation or wedding. Only you know what’s right for you.” 

She has self-care advice for care partners as well, “You need to take care of yourselves so that you are renewed, refreshed, and at your best to take care of the person you’re caring for. When you’re tired, rest. When you need a break, take it. Go out for lunch with a friend or take a walk. Do what you need to do for yourself, so you can be the best caregiver you can be.” 

For family and friends who want to help but don’t know what to say, Eva advises asking yes/no questions: “I’m making chicken for dinner, can I make you some? I’m taking the children to the park, can I take yours? I’m going to the market, can I pick up anything for you” On a visit, empower the patient by asking them how they want to spend the time, instead of making the visit about your agenda. Bring with you what you think they may enjoy; polish their nails, massage their feet, read the sermon of the week, bring a game, a joke book….

Eva has lessons learned about oral health. “I would say as an oral cancer survivor, I’ve learned a lot about oral health. And this goes for all cancer survivors, the health of your mouth is the window to the health of your full body. So, if your body is fighting cancer and even recovering from treatment, keeping your mouth in its cleanest state will serve you well.” 

Even for those who have adult children, Eva is an advocate for telling your kids the truth. Patients might think grown children are too busy with their own responsibilities, but she advises talking to them about your cancer, because it’s an opportunity to teach them about what it means to be a family. If you choose to hide a diagnosis from children, you are promoting secrecy and dishonesty, you risk a lot of anger if they find out you withheld the information, and mostly, it’s an opportunity to teach children how to overcome life’s challenges.  Life is in balance. When tragedy strikes, notice the opposing forces of gratitude and hope.  

Every cancer survivor should get an oral cancer screening at their dental checkup. If you don’t know whether you receive a screening, visit sixstepscreening.org. “Or simply tell your dentist, ‘I want an oral cancer screening. It’s the standard of care, the American Dental Association says that everybody should be getting the screening at least once a year at a dental checkup.’”

After surgery and reconstruction, Eva can swallow normally but can’t feel or taste in the area where her cancer was. She can only chew on the right side of her mouth but still feels grateful. “The body is amazing. It adapts in a phenomenal way, so whatever you lose, however your body changes, it will learn to adapt to work for you. It takes time, it takes patience. But there’s hope for a really good life after cancer, but the mind is part of it, and also taking good care of yourself is really important so that you can be the best person you can be.”

Eva’s children were 5 and 7 when she endured treatment for cancer. To help children like her own cope with a diagnosis in the family,  she wrote two children’s books to promote dialogue between adults and children and to help them cope with their feelings and fears. 

Eva speaks to oral cancer survivors internationally and provides hope. If you know someone who has been recently diagnosed, don’t hesitate to reach out to Eva: eva@evagrayzel.com

#patientchat Highlights – Patient Advocacy: Boosting Online Presence

/in , , /by
Bookmark (0)

No account yet? Register

Last week we hosted a “Patient Advocacy: Boosting Online Presence” Empowered #patientchat on Twitter with special guest Marie Ennis-O’Connor (@JBBC). Take a look at the top tweets and full transcript from the chat.

Top Tweets

What are the benefits and/or disadvantages of taking your patient advocacy to online communities/platforms?

 

What are your go-to tips for starting on social media whether it’s starting a blog or just trying to find community?

Full Transcript