Should a Patient Pay Cash for an Unapproved Treatment

These are desperate times and I often get asked the question “should I pay for a treatment that my insurance company is denying”?  This often becomes an option after a patient has received standard therapy and possibly one or more clinical trials.  Often a physician has a hunch that a particular drug might have activity in mesothelioma, is approved for another cancer and not covered by your insurance plan.  A hunch unfortunately does not include a discussion of the percentage of responses that have been observed nor the toxicities observed in mesothelioma.  Unfortunately you will incur all the risk including the financial costs without a clear delineation of the risks versus the benefit.

Now suppose you elect to purchase this treatment…there are a number of areas that you need to consider.  If you are hospitalized for a non approved out of pocket drug there is a possibility that the insurance company will deny payment for your care.  You will need to check your policy and perhaps speak to an agent before you take this risk.  Insurance companies are becoming increasingly difficult to work with and they will become more so in this failing economy.   If you are stable on this drug, the unanswered question would be: is your disease in a “slow growth” phase or is the drug working?  In an area of uncertainty it would be very difficult for you to feel comfortable stopping the therapy and many of these new agents can cost upwards of 4,500 per month.  Can you afford this and is this truly in your best interests?

Phase I clinical trials are conducted at many hospitals across the country.  Insurance coverage varies but the investigator and hospital will precertify you before you can enroll in the program.   You should be well informed about any costs that you will be liable for.  Volunteering to participate in a clinical trial helps the entire mesothelioma community.  This allows for data to be collected and peer review of the reported results.  Without your volunteerism advances will not be made in treating mesothelioma.  Alimta began as a Phase I drug tested in many cancers and responses were observed in mesothelioma.  Many Phase I trials will prove to have little if any impact in mesothelioma but unless mesothelioma patients actually receive these drugs we will continue to make little headway in curing this disease.  Please call me if you have any interest in exploring your clinical trials options.  Help the community in this battle.  Though the purpose of a Phase I study is to determine the safety and tolerability of a drug, the article below provides some rationale for a benefit to the patient who participates in Phase I studies.   Let me know what you think about this issue?

~Mary Hesdorffer, NP

Click here to contact Mary Hesdorffer, Nurse Practitioner or call 877.363.6376

Campaign Season

Some of you may have received the most recent Action Alert informing you of what you can do during the end of this Congressional Session while the House of Representatives is on recess to campaign for re-election.  The Meso Foundation is urging everyone to contact their Representative to talk to them about the issues, namely HR 6903 (Click here to view HR 6903).  The new advoacay action was to write to members of Congress who have not signed on as co-sponsors to the “Bruce Vento Ban Asbestos and Prevent Mesothelioma Act of 2008″ as well as request a meeting with your Representative while they are at home campaigning.  For those of you who have not received an email requesting this action, your Representative may be a co-sponsor for HR 6903 or may not be running for re-election.  In the case where your Representative is a co-sponsor, you can stay in contact with by thanking him/her for the hard work and support for HR 6903 and inform their office that you look forward to keeping in touch with them  during the 111th Congressional Session.

Gene Green proposes to continue the Energy and Commerce Committee’s work on the bill next Congressional Session. (Click here to view his speech) Our plan is to hit the ground running after the inauguration of our new government our efforts will get HR 6903 passed and raise national awareness of this tragic disease through a federal proclamation of Meso Awareness Day.  Let’s make sure our voices are heard; request support for HR 6903, ask our lawmakers to ensure that mesothelioma research funding is added to this legislation and raise awareness in our community by asking our family and friends to join in our advocacy efforts.

Although the Meso Foundation can not endorse anyone during the election, we hope that this special election will promote you time to access to your government officials while they are campaigning at home in order to talk to them about where they stand on the issue of banning asbestos and providing research funds for mesothelioma treatments and a cure.  Many of you are spurred by all the work done to raise awareness for this year’s Meso Awareness Day (Click here to view a map of MAD proclamations) and can continue the momentum by writing, calling and talking about HR 6903 and the possibility of your Representative or Senators sponsoring or signing onto a National Proclamation for MAD 2009.

~Jeni Piccolo

The Power of Community

Reading the recent postings, I was struck anew by the sheer power of a force that has never stopped astonishing me since the day of my diagnosis, over 6 years ago. I’m referring to the power of community, and nowhere is everything that term implies more amply demonstrated than here.

I’ve frequently mentioned how, as a nurse, I’ve seen a lot of support groups and support systems, but nothing matches the mesothelioma community for determination, openness, and unconditional compassion.  We are a diverse group in terms of age, politics, background, and beliefs, and yet these differences are instantly swept aside in order to focus on our shared experience. We nimbly bridge any gaps for the purpose of communicating the essentials and bolstering our common humanity.  In this age of fragmented societies, the rest of the world would do well to model what we have put into practice so instinctively.

I’m not just singing the praises of this community for lack of anything better to do – I think it’s important to review this phenomenon on an ongoing basis to point out just how vital a role it plays in the lives of others. You have only to look at how the tone of what is written by a newcomer changes over the course of a few posts to see the impact clearly. What starts as tentative and fearful morphs into hope and relief, and even joy. Where else on earth would any of us find the opportunity – indeed, the privilege – to have such an effect on the lives of others?

This is the nature of awareness. We seek to spread awareness not only to call attention to our own plight, but to shine a light in the darkness so that others who are in need can find the same optimistic path. For every newcomer who finds their way to this resource and says “thank goodness I found this group”, there must be many others who for one reason or another, never realize we are here.  I for one cannot imagine dealing with a diagnosis of mesothelioma without the benefit of the “common unity” the Foundation provides. This is what makes awareness activities so critical.

We all need to invest in an effort to “spread the word”. Yes, we may make other people aware that meso exists and requires funding. But realistically, we all know how many causes there are out there clamoring for the attention of busy individuals who are leading ‘normal’ lives – if they are lucky, these people may never attach much importance to what we say about meso.   There will be, however, many people who are NOT so lucky, and who will hear (or have heard) the word “mesothelioma” from the lips of their doctor and not know what to do or where to turn next. They are our primary target audience.

Each of us can acknowledge what the support of the community has meant to us by ‘paying it forward’. We can reach out to others lost in the same dark despair that once colored our own lives, and do so with a minimum expense of time and energy on our parts. And there’s a plus: in doing so, we strengthen ourselves and our community in the process…

The Foundation has brochures for patients that can be left at physician offices, cancer clinics, etc.  Think about your area and where such materials might be most likely to reach their intended audience. In addition to the brochures,  the Breath of Hope newsletter (consider passing your copy on when you’re done reading it) can be left in waiting rooms, pharmacies, wellness centers where potential patients might see them, or in locations frequented by at-risk populations (like union halls or veterans’ centers).

If you’re able, add the personal touch to your outreach activities. Let the places you visit to leave materials know that you are available to speak to any patient who wants more information. Even if you can’t get out and visit places, you can call doctors’ offices, clinics, etc., and/or send them letters letting them know you are available to help any mesothelioma patient/family who asks for such assistance.

One caution – and I hate to bring it up in this heartfelt discussion about human contact, but we do live in thereal world after all….. Be prudent about passing out personal information. Consider setting up a separate email address that can be used solely for outreach efforts and responses, and don’t readily supply your address until you are certain about doing so.

Lately, I’m realizing that I really am NOT alone – there are a lot of us here in the Northeast, particularly in the PA, NJ and NY region! We’ve gotten together on an occasion in the past, but we’re currently contemplating taking it one step further and pooling our ideas, energies and resources to organize an annual September fund-raising and awareness activity. We’re already exchanging emails on the subject, and hope to all meet somewhere mutually accessible for lunch and brainstorming.

Perhaps, like me, you have other members of the meso community near where you live. Wouldn’t it be great to meet somewhere to talk face to face, and share resources and tips pertinent to your area? Even if there are just a few of you, think about meeting in a coffee house or library. Consider going together to local civic centers or groups to offer resources and information to other interested people, bringing with you brochures, newsletters, or even a laptop for referencing the Foundation website.

Community occurs on so many levels…. It happens every time you post in the online forums to share tips, consolation, or joy in a good diagnostic result. It happens every time you share your phone number or email to a ‘newbie’. It happens every time to talk to the other patients in the waiting room at your doctor’s office or chemo clinic.  It extends out from the web and the Foundation into the wider human community, into yourcommunity.  In the face of a powerful enemy – meso – it is an even more powerful medicine, and YOU are its distributor!

We live in a very, very big universe, relatively small beings on a relatively small planet, circling a relatively small sun. Compared to the timescale of worlds, our lives are brief, and they often seemed plagued by cruelly capricious fate. What gives those lives their dimension, depth, and meaning is ours to fashion out of whatever we have at hand. I’m going to paraphrase Bec again: true star children fashion light out of darkness, to both illuminate their own path and shine a light for others who follow. The coming months of approaching winter, with the short days and lengthening dark, seems like an especially good time to find ways to shine!

~June Breit

Peer to Peer Support

Peer to Peer Support is a way for mesothelioma patients and care givers to provide mutual support to each other in a mutually beneficial relationship.

Introduce yourself and let them know that you are calling as a volunteer of the Foundation.  You are representing the Foundation you have all the support of the Foundation.  The staff will be willing to assist you in any way to make your peer to peer counseling successful.

Exchange phone numbers and email address at this time.  If you think that they might benefit by speaking with another patient that you are familiar with please again let the medical liaison know prior to making this referral.

Make a note of the time zone as this can get confusing when you have a number of people that you are in touch with.

Try not to juggle too many individuals at once, you have your own burdens as well and though this is a mutually beneficial exercise we all need time and distance.  It is not quantity but quality of the interactions.

It is most beneficial when a session is prearranged so time can be set aside for this purpose.

You must agree to remain neutral, providing positive support only.

In this role you are not judgmental or critical and do not give advice.  It is meant to be a sharing of experience both yours and the individuals.  Do not undermine their relationship with their physician, be supportive and listen and ask if you can share this information with the Medical Liaison should you suspect a problem.

Medical referrals should also go through the Foundation.  Not every doctor or treatment is right for everyone.  If you feel that the person is in crisis refer them back to the Medical Liaison for intervention.  It is easy to get in over your head and this can lead to a poor outcome.

The person who is listening does not direct the conversation but allows those in need to express emotions providing a safe release for this exchange.  Many have no one to express their inner feelings as they often feel that they must remain strong for the patient or caregiver Allow ample time for these calls and reschedule if a conflict is anticipated that might interrupt the session.There is an ongoing agreement of complete confidentiality.

You may not “click” with this individual, if this is the case let the medical liaison know and she will reassign them.  It is not a failure on your part just human nature.  It also might be a reflection of the situation or crisis this individual might be experiencing.

If your circumstance changes and you cannot be “there” for this person due to a change in your circumstances be honest with them and let us know so we can assign someone else to provide support during your absence.

Listening Skills

Take your time, allow the person you are supporting to speak fully and feely without interruption

Let them know that you are really listening.  Rephrase and direct a question back.  This can help to clarify what the individual is thinking and help to generate discussion on a particular topic that they might be having difficulty with.

Keep a calendar and write in important dates, their next chemo treatment, follow up appointment or Ct scans.  Knowing that you are truly interested helps to develop and foster the relationship.

Take care of yourself as well.  It can be very difficult when the person you have been assisting progresses on treatment or if they die from this disease.  Let the Foundation know when these events occur so we can assist not only you but the patient or family member of your peer.

~Mary Hesdorffer, NP

Click here to contact Mary Hesdorffer, Nurse Practitioner or call 877.363.6376