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How MPN Providers Want You to Prepare for Telemedicine Visits

April 27, 2023/in MPN Newly Diagnosed, MPN Programs, MPN TelemEDucation, MPN TelemEDucation Tool Box, MPN Treatments and Clinical Trials, MPN Videos ND, MPN Videos TC, Myeloproliferative Neoplasms /by Kara Rayburn

How MPN Providers Want You to Prepare for Telemedicine Visits from Patient Empowerment Network on Vimeo.

What are some ways myeloproliferative neoplasm (MPN) providers want patients to prepare for telemedicine visits? MPN expert Dr. Jamile Shammo shares advice to avoid common obstacles to optimal telemedicine visits.

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Related Resources:

Pros and Cons of Telemedicine From an MPN Patient Perspective

Using Telemedicine to Help MPN Clinical Trial Enrollment After COVID-19

Can Mobile Health Apps Lower the Burden of MPN Symptoms

Transcript:

Lisa Hatfield:

Do you ever wonder what your doctor wishes you would do before having a telemedicine appointment with them? After all, they are meeting with patients almost daily for telehealth visits so they know what makes a successful appointment. Listen as Dr. Jamile Shammo shares her advice on how to prep to make the most of your time together:

Dr. Jamile Shammo:

When preparing for a televisit, I think it’s so important to know whether or not you would have a connectivity issue. A lot of times, I’m trying to connect with the patient and then we realize that their phone isn’t equipped to handle the televisit and that is kind of disappointing to find that out a minute before you try to connect then that visit becomes a telephone encounter, which is again, less satisfying for some patients. I mean it does the job, but again, it doesn’t provide me with the exam…part of the exam that I’d like to do, at least in that way.

Lisa Hatfield:

If you are unsure on what platform to use for your appointment or if you have to download an application, it is worth asking your care team ahead of time as Dr. Shammo says. Most institutions have a person that can assist you with setup prior to the appointment, especially if it is your first virtual appointment.

Dr. Jamile Shammo:

It would be helpful to make sure that you have a blood draw or if your physician would like to have a blood draw in my case, I always like to have a CBC beforehand or perhaps a chemistry or maybe ion studies or what have you, to have that so that there will be something to discuss. Make sure that your physician has had those results before you have the visit. Sometimes it is also disappointing that the patient thinks I’ve received those results when I actually haven’t and I have no control over that, so that would be the other piece.

Lisa Hatfield:

Take control of your visit by asking staff ahead of time if you can have a blood draw or other testing and that those results are shared with the doctor prior to your visit, that way you can discuss them live. You can typically request this by calling or using a patient communication portal. Just like with in-person visits, have your questions ready or items you would like to talk about in order to utilize your time effectively.

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First New Treatment in a Decade for MF Patients

September 28, 2019/in MPN Blog T, MPN Testing, Myeloproliferative Neoplasms, Partner Resources, PV Reporter /by PEN Editorial Staff

This blog was originally published by PV Reporter on August 16, 2019, by David Wallace, here.

INREBIC provides new, once-daily oral option for patients affected by rare bone marrow cancer

SUMMIT, N.J.–(BUSINESS WIRE)–Celgene Corporation (NASDAQ: CELG) today announced the U.S. Food and Drug Administration (FDA) has approved INREBIC^® (fedratinib) for the treatment of adult patients with intermediate-2 or high-risk primary or secondary (post-polycythemia vera or post-essential thrombocythemia) myelofibrosis.¹

“The approval of INREBIC is another important milestone for Celgene and underscores our commitment to people living with blood cancers,” said Jay Backstrom, M.D., M.P.H., Chief Medical Officer for Celgene. “We are excited to provide INREBIC as a new treatment option that may be used in patients with myelofibrosis, including patients previously treated with ruxolitinib.”

“Myelofibrosis can cause patients to suffer in many ways, including experiencing debilitating symptoms,” said Ruben Mesa, M.D., FACP, Director of the Mays Cancer Center at UT Health San Antonio Cancer Center MD Anderson. “There has not been a new treatment approved for this disease in nearly a decade. With INREBIC, physicians and patients now have another option available for myelofibrosis.”

The INREBIC development program consisted of multiple studies (including JAKARTA and JAKARTA2) in 608 patients who received more than one dose (ranging from 30 mg to 800 mg),¹ of whom 459 had myelofibrosis,¹ including 97 previously treated with ruxolitinib.¹ The JAKARTA study evaluated the efficacy and safety of once-daily oral doses of INREBIC compared with placebo in patients with intermediate-2 or high-risk, primary or secondary (post-polycythemia vera or post-essential thrombocythemia) myelofibrosis who were previously untreated with a JAK inhibitor, had enlarged spleens (a condition known as splenomegaly), and had a platelet count of ≥50 x 10⁹/L (median baseline platelet count was 214 x 10⁹/L; 16% <100 x 10⁹/L and 84% ≥100 x 10⁹/L).^1,2 In the JAKARTA study, spleen volume was reduced by 35% or greater, when assessed from baseline to the end of cycle 6 (week 24), with a 4-week follow-up scan, in 37% (35 of 96) of patients treated with INREBIC 400 mg versus 1% (1 of 96) of patients who received placebo (p<0.0001).¹ INREBIC also improved the Total Symptom Score as measured by the modified Myelofibrosis Symptoms Assessment Form (MFSAF) v2.0 diary² (night sweats, itching, abdominal discomfort, early satiety, pain under ribs on left side, bone or muscle pain) by 50% or greater when assessed from baseline to the end of cycle 6 in 40% of (36 of 89) patients treated with 400 mg, versus 9% (7 of 81) of patients who received placebo (p<0.0001).¹

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PV Reporter was the first to report Fedratinib by Celgene, offered on Expanded Access Program for Myelofibrosis patients in November, 2018.

MPN Resources

September 27, 2019/in MPN Resources T, MPN Testing, MPN-CC, Myeloproliferative Neoplasms, Partner Resources /by PEN Editorial Staff

These resources were originally published by MPN Cancer Connection here.

Resources

One of the first recommendations for the newly diagnosed is to see an MPN Specialist. This also applies to patients who have never seen an MPN Specialist. Financial difficulties can make this a difficult task. Before you begin treatment, patients and caregivers should meet with a financial counselor at the facility providing treatment. The counselor will assist in determining coverage and estimate out of pocket expenses. You might also consider an Oncology Nurse Navigator who helps provide support services, coordinates elements of care and helps you learn about additional cancer resources.

Co-pay and Medication Assistance

Patient Access Network Foundation

The Patient Access Network (PAN) Foundation is an independent, national 501 (c)(3) organization dedicated to helping federally and commercially insured people living with life-threatening, chronic and rare diseases with the out-of-pocket costs for their prescribed medications. Since its founding in 2004, PAN has provided nearly 1 million underinsured patients with over $3 billion in financial assistance, through close to 70 disease-specific programs.

Good Days (formerly Chronic Disease Fund)

Good Days works directly with pharmacies and doctors to pay for patients’ out-of-pocket expenses for medicines, including Pegasys and Jakafi.

NeedyMeds

NeedyMeds is a nationwide non-profit that has information on pharmaceutical patient assistance programs, copay programs, and other types of financial aid for those having difficulty paying for medications, durable medical equipment, and healthcare costs.

IncyteCares

IncyteCares (Connecting to Access, Reimbursement, Education, and Support) is a program designed to offer ongoing support and resources during treatment with Jakafi.

Genentech Access Solutions

(Manufacturer of Pegasys) Access Solutions offers access and reimbursement resources and help for qualified uninsured or underinsured patients through the Genentech® Access to Care Foundation (GATCF).

Nationwide Prescription Connection

Connects patients with the best medication program for them.

CancerCare Co-Pay Assistance Foundation

CancerCare Co-Payment Assistance Foundation (CCAF) is a nonprofit organization dedicated to helping you afford your co-payments for chemotherapy and targeted treatment drugs.

Patient Services, Inc. (PSI)

PSI is a national non-profit organization whose caring staff is committed to supporting people with expensive chronic illnesses and conditions through locating solutions with health insurance and assisting with premiums and prescription copayments to facilitate positive health and well-being.

Rx Outreach

A non-profit pharmacy whose mission is to provide affordable medications.

Patient Advocate Foundation Co-Pay Relief Program

PAF Co-Pay Relief (CPR) provides direct financial assistance to qualified patients, assisting them with prescription drug co-payments their insurance requires relative to their diagnosis. CPR call counselors work directly with the patient as well as with the provider of care to obtain necessary medical, insurance and income information to advance the application in an expeditious manner.

HealthWell Foundation

The HealthWell Foundation provides financial assistance to eligible individuals to cover coinsurance, copayments, health care premiums and deductibles for certain medications and therapies. If you’ve been prescribed a medication and your insurance company covers it, but you still cannot afford the coinsurance or copayment required, they may be able to assist you by paying for part of your costs associated with the medication. Also, if you are eligible for health insurance, but cannot afford the insurance premium, they may be able to assist with your insurance premium.

Partnership for Prescription Assistance

Their mission is to increase awareness of patient assistance programs and boost enrollment of those who are eligible. They offer a single point of access to more than 475 public and private programs, including nearly 200 offered by biopharmaceutical companies.

MPN Websites

Research and learn about your MPN, as you are your own best advocate. The following organizations are solid research websites.

PV Reporter

PV Reporter was created to provide “easy access” to pertinent information on Polycythemia Vera (PV), Essential Thrombocythemia (ET) and Myelofibrosis (MF).

MPN Research Foundation

Partner. Advocate. Friend. At the MPN Research Foundation, we’re committed to standing with you in the fight against polythemia vera (PV), essential thrombocythemia (ET) and myelofibrosis (MF) – the group of blood cancers collectively known as myeloproliferative neoplasms.

Patient Power

Patient Power interviews clinicians and researchers, sharing videos on line, providing patients access to the latest MPN information in the comfort of their home.

MPN Advocacy & Education and Education International

MPN Advocacy and Education International is dedicated to providing the knowledge, support, and resources patients will need as they adjust to living with an MPN through educational symposia in several cities each year, website access, free webcasts of each program, collateral materials, and direction to people, resources and other organizations that can help.

MPN Voice

MPN Voice’s mission is to provide clear and accurate information and emotional support to everyone who has been diagnosed with a myeloproliferative neoplasm (MPN)

The MPD Research Consortium

A National Cancer Institute supported project involving 50 International MPN Centers in the United States, Canada, Europe and Israel. It is a resource for both patients and physicians focusing on advancing the science and therapy of MPN.

MPN Education Foundation

The Foundation is a non-profit organization run by volunteer MPN patients. They promote cooperation in the scientific community to accelerate research and help advocate for patients and caregivers. Every 2 years, they hold an MPN Patient Conference with Mayo Clinic Scottsdale in February. Formed an online education and support list for patients, families and researchers, MPN-NET

MPNforum Magazine

MPNforum Magazine is an open source online publication managed and staffed by patients and caregivers with the volunteer participation of scientists, hematologists, and healthcare providers. A timely source of scientific information, news articles, patient stories and more.

The Fleischman Lab

Dedicated to understanding the pathogenesis of MPN in order to improve treatments for this disease.

Leukemia & Lymphoma Society

LLS exists to find cures and ensure access to treatments for blood cancer patients. They are the voice for all blood cancer patients and work to ensure access to treatment. LLS is the leading source of free, highly specialized blood cancer information, education and support for patients, survivors, families and healthcare professionals

NORD (National Organization for Rare Disorders)

The National Organization for Rare Disorders is committed to the identification, treatment and cure of rare disorders through education, advocacy, research and patient services.

Patient Empowerment Network

To fortify the health care consumer with the knowledge and tools to feel more confident playing a central role in decisions that affect their health, putting them more in control of their health and health care.

Airfare

Corporate Angel Network, Inc. (CAN)

Corporate Angel Network is the only charitable organization in the United States whose sole mission is to help cancer patients access the best possible treatment for their specific type of cancer by arranging free travel to treatment across the country using empty seats on corporate jets.

National Patient Travel Center

The purpose of the National Patient Travel Center is to ensure that no ﬁnancially-needy patient is denied access to distant specialized medical evaluation, diagnosis or treatment for lack of a means of long-distance medical transportation.

Angel Flight Central (AFC)

A volunteer non-profit organization whose mission it is to “Serve people in need by arranging charitable flights for health care or other humanitarian purposes.” AFC volunteers and supporters throughout the Midwest have made possible over 20,000 flights “free of charge” covering over 8 million miles.

Air Care Alliance (ACA)

Provides a listing of nonprofit organizations, nationwide, that fly patients to treatments at no charge.

Cancer Resource Database

Cancer + Careers

One of the broadest resource databases for cancer patients we have seen. Covering support services, employment, legal, insurance, financial, transportation, personal care, nutrition and more. Be sure to click on “view all” under each category and browse the entire site for a wealth of information.

Wind River Cancer Wellness Retreats & Programs

Finding information can be difficult and time-consuming. To help make it easier for cancer survivors and their families, Wind River has gathered links to various resources that you may find helpful.

Federal Benefits (U.S.)

Disability.gov

If a patient is likely to be unable to work for 12 months while undergoing treatment, applying for Social Security Disability may be an option. The site connects people with disabilities, their families and caregivers to numerous helpful resources on a variety of topics.

Benefits.gov

For US citizens: This official government website helps citizens navigate federal and state resources for which they may be eligible.

Medicare Rights Center

The largest independent source of health care information and assistance in the United States for people with Medicare.

Molecular Mutations in MPNs: Impact on Treatment

September 27, 2019/in MPN Testing, MPN Videos T, Myeloproliferative Neoplasms /by PEN Editorial Staff

This video was originally published by MPN Advocacy and Education on March 1, 2018, here.