Advocacy Groups as Valuable Resources for Patients and Navigators

April 2019 Vol 10, No 4
When a cancer diagnosis is made, a multitude of emotions immediately follow—fear, stress, anxiety, and an overwhelming sense of urgency to begin whatever course of treatment is prescribed. Many times, navigating the complicated world of oncology can be overwhelming for patients. And quite honestly, it can be overwhelming for oncology navigators as well. It becomes essential for navigators to press all their resources into action to best serve their patients. This is exactly why the Medical Outreach Department at The Mesothelioma Center was created—to assist those confronted with a mesothelioma diagnosis to obtain the best care.

The Medical Outreach Department at The Mesothelioma Center consists of the Director, Missy Miller, and Medical Outreach Liaison, Jose Ortiz. They tour the nation’s best hospitals and cancer centers to build relationships and learn about the latest treatment advances from mesothelioma specialists and researchers. Together, they work with patients, nursing staff, coordinators, social workers, therapists, patient navigators, and chaplains to ensure patients take full advantage of available resources. Their goal? To engage and help patients and healthcare professionals to make a positive impact in the mesothelioma community.

The publisher of JONS had the pleasure of meeting with the Medical Outreach Director, Missy Miller, to talk about her work, patient success stories, and the center’s ability to enhance the patient experience.


JONS Good morning and thank you for meeting with us, Ms Miller. I was hoping you might take a minute to describe your professional role at The Mesothelioma Center as well as the types of issues that you and your team are accustomed to addressing for patients.

Ms Miller My role as the Medical Outreach Director is to ensure that our department helps all patients diagnosed with asbestos-related diseases, specifically mesothelioma and lung cancer. We accomplish this in a variety of ways, which include meeting personally with healthcare professionals, hospitals, and other organizations that may see these patients to offer our unique material and informational resources and support.

We are accustomed to overcoming the many barriers that patients and navigators face in the course of a mesothelioma diagnosis. Barriers to care typically consist of issues such as insurance denials or appeals and access to care, medicine, housing, financial assistance, grants, travel, Social Security Disability (SSDI), and Veterans Administration assistance.

JONS Is there a specific case you can describe that demonstrates your ability to remove a barrier to care for a patient?

Ms Miller We’re fortunate to have built a professional, credible network and source of trust with many healthcare providers that has allowed us to assist countless patients diagnosed with this illness and have encountered numerous barriers to care, but one that specifically stands out is a young patient who did not have healthcare insurance.

This patient needed treatment but simply did not have the means to afford treatment on his own. We worked to obtain SSDI and state-funded Medicaid. Receiving disability allowed the patient to meet his monthly bills, which then allowed the patient to take time off work. Medicaid provided the insurance needed to seek proper care from a medical facility that specializes in mesothelioma. This story marks a huge success for the patient and highlights our ability to help patients access care.

Unfortunately, there are many instances in which uninsured people with a mesothelioma diagnosis are told there’s nothing that can be done unless they have the money to pay for the treatment. But patients with mesothelioma and lung cancer caused by asbestos typically qualify for SSDI and/or other types of financial assistance. We can help them with that application process and then take it a step further and help them get registered for Medicaid or Medicare so they have insurance to help offset some of the treatment-related cost.

JONS Do you also work directly with oncology nurse navigators to remove barriers to care for a patient?

Ms Miller Absolutely. In fact, we just recently assisted a navigator who has extremely limited time as she is the only navigator for an entire thoracic department. She had a patient whose insurance was denying payment for a portable oxygen tank. The insurance would approve a large, stationary oxygen tank, but as you might imagine, that’s not very functional for a patient when they need to leave their house.

The navigator called and asked if we had any suggestions or solutions. She gave the patient our direct contact information, and I was able to speak to the patient directly and obtain his healthcare insurance information. Through research, I was able to determine that insurance would approve durable medical equipment, in this case a portable oxygen tank, if we used an approved vendor.

There are times when doctors will write a script for a certain device without designating a brand. And many times, healthcare insurance requires a particular brand durable medical equipment or a specific vendor. This nuance allowed us to resubmit to insurance and get that cost covered for the patient, and he only had to pay a small deductible.

JONS How do navigators and patients find you?

Ms Miller The majority of the time it’s by calling us directly at 1-800-549-0544, or by e-mail at medical This email address is being protected from spambots. You need JavaScript enabled to view it.. We also attend and exhibit at medical conferences around the country that have members who treat mesothelioma patients. Jose and I have been able to build credible and trusting relationships and a deep understanding of important key organizations in the mesothelioma healthcare community. Because of these relationships, our website consists of content contributed and reviewed by mesothelioma experts. As a trusted source on the Internet, patients can also find us online at www.asbestos.com. We always encourage patients, nurses, or anyone looking for help to ask for the Medical Outreach Department so we can easily collaborate and help them with any assistance they need.

But more and more, hospitals are realizing the value of having a nurse or patient navigator on staff. We’re hoping to build relationships with navigators so they can also rely on us as a trusted resource for their patients.

JONS Navigators are highly concerned with impacting and improving clinical outcomes and patient experience. I’m curious how your services complement navigators’ efforts in these areas.

Ms Miller We stay current and engaged with healthcare professionals and other key organizations that provide us with up-to-date information.

Most importantly, we feel we can impact clinical outcomes by assisting patients in accessing a specialist. And we impact the patient experience by helping to facilitate appointments, helping them with insurance appeals, and connecting them with our resources. We also ease the navigators’ workload by assisting them, freeing up some of their extremely valuable time. We hope to take on some of the burden in navigating the obstacles to care.

JONS Does your group follow patients all the way through the care continuum?

Ms Miller Typically, our Medical Outreach Liaison, Jose, and I follow the patients from the moment we connect with them—hopefully at the beginning of their treatment—through the end of treatment and follow-up appointments. Many of them become like members of our family. We try to help them throughout their entire journey. Once we have connected with a patient, it is very common for them to contact us with any issues that may arise for them; and we try to help them navigate through it and make it as stress-free as possible.

JONS Can you describe the process of getting a patient to a specialist for either a second opinion or a validation of treatment strategy?

Ms Miller Yes, it’s important to note that we do not take patients away from medical institutions. If they’re at a specific hospital or facility, we want to reassure doctors, navigators, and patients that we’re not attempting to send them to another facility. If they are interested in having a mesothelioma specialist review the records and offer advice on the optimal treatment strategy, we can connect them and streamline the process. Allowing us to speak with or help patients opens up our ability to discuss realistic, good fits based on each unique individual’s need and not have someone stressing about or traveling to somewhere from which they will not benefit. In this way, the patients can remain at their local center and possibly still receive the care they would receive from a mesothelioma specialist. The majority of the experts and places we recommend for second opinions are familiar with and great about communicating a plan with a patient’s local doctor and team.

We also facilitate phone consults between healthcare professionals to explore all treatment options that may be available for that patient. These consults are a great way to provide peace of mind to patients.

JONS Financial toxicity is a highly relevant issue for patients with cancer and, as a result, for their navigators. You have extensive experience in addressing these concerns. Can you discuss your team’s expertise?

Ms Miller Sadly, paying for care is one of the greatest concerns that patients face. With medical expenses, copays, and patient deductibles rising, it is really hard for patients and their families to cope with the financial burden they face after diagnosis. Our goal is to address the financial hardship and properly prepare them by educating them on what to expect.

We firmly believe that knowledge is power, and that planning is essential. We take great pride in the research we’ve done to educate ourselves on the resources that are available to help mesothelioma or lung cancer patients overcome financial burdens. We’ve helped many patients understand SSDI options while they’re out of work. We can provide information about travel grants and trust funds and understand legal options for which they may be eligible.

Basically, we just hope to alleviate some of their financial stress by exploring their eligibility for different funds and financial grants, so they can focus on getting better instead of the financial burden of their care.

JONS How do you support and strengthen thoracic oncology programs across the country?

Ms Miller We hope to add value by partnering with thoracic medical, surgical, and radiation oncology teams. Together, we can offer support and strengthen the care the patient receives. The demands placed on healthcare professionals continue to grow; we hope to alleviate some of their responsibilities by assisting them in removing barriers to care.

We completely understand that their time is extremely valuable and often limited, so we’re trying to work on different ways that members of the department can reach out to us and allow us to help their patients, and we hope that by doing this it will allow them to achieve and surpass their goals in helping mesothelioma patients.

JONS How can navigators contact you?

Ms Miller We want to be as easily accessible as possible, and we encourage anybody who wants to reach out to us to either e-mail us directly at This email address is being protected from spambots. You need JavaScript enabled to view it. or call us at 1-800-549-0544. Our Medical Outreach Liaison, Jose Ortiz, and I are happy to help anyone who reaches out, and we highly encourage and welcome everyone who is considering or will be needing help to make sure they ask to speak with the Medical Outreach Team. They can also go to www.asbestos.com to request any information or resources. We are flexible and want to help during this sensitive time, so we do encourage anyone who visits us online or calls in to ask for or include “Medical Outreach Department” in any forms or other interactions.

JONS Thank you for your time today and for all you do for patients with mesothelioma. And please accept our best wishes for your continued success.

The Mesothelioma Center

www.asbestos.com
Medical Outreach Department
1-800-549-0544
This email address is being protected from spambots. You need JavaScript enabled to view it.

Missy Miller
Medical Outreach Director
This email address is being protected from spambots. You need JavaScript enabled to view it.
Direct: 407-928-8551

Ms Miller connects patients, navigators, and community oncologists with top mesothelioma specialists, social workers, and advocates. Ms
Miller’s expertise in making these connections can help to ensure the best possible prognosis for a patient. She also helps patients find grants to help access and afford the care they need. She is also responsible for shipping a free mesothelioma educational packet to patients and facilities.

Jose Ortiz
Medical Outreach Liaison & VA-Accredited Claims Agent
This email address is being protected from spambots. You need JavaScript enabled to view it.
Direct: 407-288-6420

Mr Ortiz builds relationships and collaborates with an outstanding network of mesothelioma specialists for the benefit of patients. Utilizing his extensive background in healthcare, he also helps identify and support physicians and professional healthcare association programs with possible clinical, educational, and research grant opportunities to give back to the mesothelioma community. As a VA-Accredited Claims Agent, he also helps veterans file VA benefits compensation claims and access care within the VA and private sector healthcare systems.

This edition of Interview with the Advocates was sponsored by The Mesothelioma Center.

Related Articles
The Mesothelioma Center: A Valuable Resource to Patients and Specialists in the Mesothelioma Community: An Interview with Missy Miller of The Mesothelioma Center
July 2018 Vol 9, No 7
For over 10 years, The Mesothelioma Center has provided quality resources and information for patients and their family members coping with mesothelioma. The publisher of JONS had the pleasure of meeting with Medical Outreach Director Missy Miller to talk about the mission of The Mesothelioma Center and the services it offers to patients.
Last modified: April 9, 2019

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