August 30, 2011

To the Editor, New York Times:

In response to Barron H Lerner's article of August 29 regarding his assumptions pertaining to the efficacy of HIPEC, it's a pity that he did not research the topic thoroughly and chose to cloud the facts by referencing antiquated, and now discarded medical treatments from the late 19th and mid-20th centuries. Mr. Lerner, it's time for a wake up call; this is the year 2011.

As a volunteer patient advocate, with no financial interest or gain from the pharma or healthcare industry, I represent the needs of thousands of Pseudomyxoma Peritonei and Appendix Cancer patients around the world who credit the HIPEC procedure for saving their lives.

As an incurable patient myself and given a prognosis of 18 months,I was provided with no alternatives with the exception of a series of five grueling debulking surgeries, resulting in more than half of the organs within my abdomen being removed or resected, while my cancer continued to grow.

Finally, in 2006, after being referred to hospice, I was provided with the opportunity to have a sixth surgery, this time with the HIPEC procedure, with Dr. David L Bartlett at UPMC in Pgh PA.

Obviously, five years later, I am still alive, having benefitted from the HIPEC treatment, as have countless other patients around the world.

If Mr. Lerner had researched the diagnosis of the appendiceal cancer patients, like me and my colleagues, who seek HIPEC treatment, he would have learned that merely a few hundred cases, like ours, are diagnosed in the United States annually.

Unlike the more common cancers, i.e. breast cancer, in which tens of thousands of patients are diagnosed annually, we appendix cancer patients are few in number, therefore we lack the volume of patients and the funding required for extensive clinical trials.

As surgical oncologists and patients united, we are doing our very best to achieve the optimal course of treatment. To date, the majority of those of us appendiceal cancer patients who have been treated with HIPEC find that HIPEC has afforded us our best chance to live, and not only to live, but to lead productive lives.

For those “commenters” and Mr. Lerner who insist we, the appendix cancer patients, wait years to complete clinical trials, please consider this:

 1) We patients don’t have years to wait. Left untreated we will die.

2) The majority of us want to receive the HIPEC treatment, as the treatment approach appears to be both logical and lifesaving

3) Unlike the more common cancers, clinical trials are few and far between for patients diagnosed by rare or “orphan” cancers. Patients afflicted with rare cancers and orphan diseases don’t have the “luxury” of vast numbers of patients, i.e. breast cancer patients, to be tested.

Patients deserve options for treatment. After a patient has carefully examined his/her options, s/he should be able to make the decision of whether or not to pursue the HIPEC treatment. Each patient is an individual and although patients may share a common “diagnosis” each case is unique.

Patients have a right to, and deserve options, and for many patients, the HIPEC treatment is indeed that option.

Thanks to modern access to information regarding the pros and cons of any medical treatment, today’s patients are better informed about their choices.

I daresay that if Mr. Lerner or any of his loved ones have the misfortune of being diagnosed with appendiceal cancer, he too, will want to have the option of the HIPEC treatment available to him. Perhaps next time Mr. Lerner will thoroughly research a topic before posting his opinions in a manner which may appear to be detrimental to cancer patients such as myself and my fellow cancer survivors who have benefitted from HIPEC treatment.

Sincerely,

Gabriella Graham,
Patient Advocate and Founder of the PMP Pals’ Network, www.pmppals.org

 
Articles posted in PMP Pals and on www.pmppals.org are written from the perspective of patients and their families and are not intended to substitute for licensed, professional, legal or medical advice. Patients should seek the counsel of their licensed healthcare providers. Copyright © 2011 by Gabriella Graham/PMP Pals’ Network/All rights reserved.

Visit us on the web at www.pmppals.org
We have HOPE for YOU!

 
 
Pioneers in Appendix Cancer Treatment

This morning I talked with a caregiver whose father has agreed to be treated with an experimental chemotherapy in an attempt to halt the rapid progression of the cancer that has challenged him for months. I commented to the caregiver that I believe his dad is courageous in agreeing to be treated with the new therapy, especially in consideration of the possible side effects of the treatment.

The son responded that his father is feeling anything but courageous. “Truthfully, Dad is concerned about any possible side effects from further cancer treatment.”

Who among us has not felt this way, even if just for a moment, when considering the pros and cons of established medical treatment, let alone, new medical therapies?

On one hand, we patients are optimistic that a new treatment will arrest and possibly eradicate our disease. On the other hand, as educated patient/consumers we read the “fine print”, hear rumors of what might possibly go wrong, and perhaps increase the suffering that we are attempting to prevent.

Virtually everyone living today, who has ever been treated through modern medicine, has benefited since our mother’s pre natal care, from what were initially experimental treatments. These treatments have been refined and improved through the centuries.

Anesthesia, pain management, infection prevention, vaccination, diagnostic tests, etc, have all been developed through experimentation. Therapies that initially are tested with laboratory animals, eventually move ahead to human testing, if they are deemed worthwhile.

Since we have all benefited from tests that were conducted on patients before us, we may consider it to be part of the human responsibility to also participate in new tests, if we are inclined to do so.

We ask ourselves, “Do the risks outweigh the benefits?” “Do I have other choices?” “What are the consequences of me accepting this therapy, or not accepting it?” Sometimes we feel we are caught between a “rock and a hard place” especially when our options are limited.

How much does our perspective affect the way we consider the risks and benefits of new therapies? Do we see ourselves as “guinea pigs”, as helpless laboratory animals, or as pioneers dedicating our bodies to science? Are Appendix cancer patients gamblers, taking a chance with a roll of the dice, so to speak?

Or,are we warriors, attempting another stand, risking possible defeat, or the bounty of improved health?

For those of us who have experienced years of medical treatments, surgeries, chemotherapies and the gamut of diagnostic tests, whether we realize it or not, we have contributed to the teaching of countless young physicians, nurses, researchers and medical technicians who have observed and treated our medical cases, both with “conventional” methods and new therapies.

Yes, our bodies, are tested and used to educate healthcare professionals. In turn, the knowledge gained from our surgeries, and our medical care in general, is used to create medical therapies to aid patients in the future.

Just as we have benefited, and our lives have been extended from the contributions of patients that were treated before us, so will future patients benefit from the medical care we receive today!



Copyright 2011(c) by Gabriella Graham/PMP Pals’ Network/All Rights Reserved.

To learn more about Appendix Cancer and Pseudomyxoma Peritonei, visit us on the web at www.pmppals.org
 
 
Filing an appeal when you insurance claim has been denied

Before scheduling treatment, check for the following:

Does your plan provide out of network coverage?
Is your provider an HMO (Health Maintenance Organization)?
Is your provider a PPO (Preferred Provider Organization)?

Keep your health insurance card on hand. The card includes identifying information about your policy, including co payments.

Before you get started with the appealing the denial of coverage, check for the following:

Policy exclusions and restrictions

Denials may be made because the policy specifically excludes coverage of a certain treatment, procedure or medicine. Contact your insurer’s case management department to confirm whether specific costs are covered (ideally, this should be done before you are admitted to the hospital for treatment.)

Organize your paperwork

Organize all the information you need from your insurer before you start the appeal process. The "explanation of benefits" should provide a code for the reason your treatment(s) was denied. If you cannot locate the code, ask your insurer to provide it.

Notate the name, date, time, phone number, and extension of each person you talk with, whenever you call your health insurance provider.

Find out exactly to whom the appeal should be addressed and mailed. Keep copies of any written correspondence and send it via registered mail, requesting a return receipt.

Clerical and coding errors

Check to see whether the denial was due to a clerical or coding error. If the denial was due to an error, have your hospital, or physician's billing clerk, correct the error and provide you and the health insurance provider with a corrected copy of the bill, with the correct code.

Reason for denial

Specifically, why was your claimed denied? Follow the guidelines of the “denial letter.” Customize your appeal, specifically for the reason your claim was denied.

Time limitations

Most insurers set aside a time period during which a patient may file for an appeal. Check your policy to determine this time limit, which may be 60, 90 or 180 days. Monitor time limitations so you don't miss the deadline for your appeal.

Emergency Out of Network Care

Coverage/reimbursement of an out-of-network emergency claim, will require proof

1) Of the medical emergency and

2) Confirmation that no in-network provider was readily available, within reasonable proximity of the emergency. Use your emergency medical records, with doctors' notations, to support your claim.

"Experimental" Protocols/Treatment

HIPEC is more commonly denied for payment as “experimental” medical treatment among our fellow patients than any other protocol/treatment. The surgical oncologist who proposes treating you with HIPEC should be your first line of defense for this type of denial. He/she should be prepared to provide you with a letter stating that HIPEC (or any other treatment being denied) is the established protocol/treatment method for your specific diagnosis. His/her letter can be accompanied by medical journal publications by that surgeon or others, as noted in the red Alpha Index section of medical journal articles posted on the Pseudomyxoma Peritonei page at www.pmppals.org

State Appeals Review Boards

If you receive coverage directly from an insurance company, your insurer is regulated by your state’s insurance department. With the exception of Alabama, Mississippi, Nebraska, South Dakota and Wyoming, patients in all other states are allowed to have their appeals considered by an independent external appeals review board.

Generally, the review board consists of physicians and other healthcare providers with expertise in your disease. Contact your state department of insurance for more information.These departments are listed on the Health Insurance link at www.pmppals.org

Additional assistance

Advocacy groups will assist you at no charge. An extensive listing of patient advocacy groups is posted on the Health Insurance page at www.pmppals.org



Articles posted in PMP Pals and on www.pmppals.org are written from the perspective of patients and their families and are not intended to substitute for licensed, professional, legal or medical advice. Patients should seek the counsel of their licensed healthcare providers. Copyright © 2011 by Gabriella Graham/PMP Pals’ Network/All rights reserved. Visit us on the web at www.pmppals.org
 
 
This week, Charlotte, one of the founding members of the PMP Pals’ Network asked a question that is shared by many “veteran” Pals.

“It appears that the PMP Pals’ Network is serving more patients now than ever before in our history.”

Are cases of PMP on the rise?”

Not only has Charlotte been an active participant in the PMP Pals’ Network since its inception, this much revered Pal, also has the distinction of being our most “senior” member, having celebrated her 90th birthday a few months ago. Charlotte’s diagnosis is Mucinous Adenocarcinoma. She is not cancer free.

Charlotte says, “When I was diagnosed in 1993, fewer than fifty cases of Pseudomyxoma Peritonei were reported. Now we are hearing about new cases within the PMP Pals’ Network, every month.”

In response to Charlotte’s question, Gabriella offers the following observations:

"It is unlikely that Pseudomyxoma Peritonei  is increasing more often in patients, in general.

Thanks to the internet, healthcare providers are able to disseminate information, including statistics, which are now more easily accessed by patients and the general public.

Treatment specialists, in particular, are able to educate and exchange information about our rare disease through their own networks, symposiums and publications. Patients are able to access much of this information as well.

The availability of enhanced reporting techniques and exchanges of information may make it appear that more cases are occurring; they may simply be recognized and reported better now than during any time in previous medical history.

During the past twenty years more young surgeons have studied under the tutelage of our patriarch surgeons. These younger surgeons are now are practicing at hospitals throughout the world, and, in turn are educating their fellow physicians. These factors have contributed to more cases being accurately diagnosed and reported.

To improve patient survival, it is important that a broad spectrum of physicians and nurse practitioners be taught to recognize the suspected symptoms of Pseudomyxoma Peritonei.

This need is especially important among family general practitioners, OB/GYNs, general surgeons, radiologists and nurse practitioners who must become educated to:

1) Recognize symptoms

2) Order appropriate diagnostic tests

3) Diagnose accurately, and, very importantly,

4) Refer the patient directly to a specialist.

Click here to review a comprehensive listing of Pseudomyxoma Peritonei treatment specialists around the world.


Click here to submit your comments about this article or any article posted on www.pmppals.org

Visit www.pmppals.org to learn how you can participate in one or more of our two dozen “Pal” support and resource groups.
We welcome patients and their families!
 




Articles posted in PMP Pals and on www.pmppals.org are written from the perspective of patients and family caregivers and are not intended to substitute for licensed, professional medical or legal advice. Patients should seek the counsel of their own licensed healthcare professionals regarding their personal, specific needs. Copyright © 2011 by Gabriella Graham/PMP Pals. All rights reserved

 
 
 Suggestions for Coping with Grief

The PMP Pals’ Network hosts 24 specific support and resource groups. Twenty two of those groups focus on teaching patients how to live well with, overcoming the challenges of cancer treatment, so they may move forward and live healthy and productive lives!

Since we still don’t have a one hundred per cent cure for cancer, two of the Pal Support and Resource groups focus on the needs of the families who are the most challenged by cancer: hospice families and grieving families. We describe those families who have lost a spouse, partner, parent, child or sibling to cancer as our Loved Ones’ Support Group.

This week we have been exploring a question presented by newly widowed Pamela. Pamela and her husband were high school sweethearts and were together more than 40 years.

In addition to losing her husband to appendix cancer, Pamela also lost her brother, to brain cancer, during the same week. The grief that Pamela is experiencing feels overwhelming at times.

Pamela poses this question, “Why did God allow so much suffering for my family, in particular?”

This question is pondered by many, especially during situations of tremendous loss.

Pamela turned to the PMP Pals’ Loved Ones’ Support Group for an explanation to this common question.

Heather, who has also recently been widowed, offered today’s response. Heather’s own husband passed away from complications related to appendiceal cancer earlier this year. Heather is now the single mom of a young teen and is raising her daughter alone.

Heather shares the following thoughts:

“Let us look at the experiences of Job. Lessons are to be learned from suffering, whether it's “God's doing” or man's. 

Patience, compassion, understanding, humility…we experience many emotions and feelings; with everyone it's different.  I'm not sure of my lesson(s) perhaps, because I'm still in denial about the recent loss of my own husband, and also because I am sad.  

I'm not upset at God anymore, but I am upset at the situation. Cancer stinks! 

My heart is so much more tender than it was before my loss. Whenever I want to have a pity party for myself, I think of what my husband endured and what others have experienced.

Yes, I still cry on a daily basis, usually by myself at night. 


I wake up in the morning and put a smile on my face, not because I love my life now, but because my husband fought so damn hard to try to save his life. I need to thank God for one more day on His Earth.

Does God allow families to suffer? No!

But cancer does.

 

Visit www.pmppals.org to learn how you can participate in one or more of our two dozen “Pal” support and resource groups. We welcome patients and their families!

 

Articles posted in PMP Pals and on www.pmppals.org are written from the perspective of patients and family caregivers and are not intended to substitute for licensed, professional medical or legal advice. Patients should seek the counsel of their own licensed healthcare professionals regarding their personal, specific needs. Copyright © 2011 by Gabriella Graham/PMP Pals. All rights reserved
 
 
Signet Ring Cell "Pal" Responds to NYT Article of August 11, 2011
(Hot Chemo Bath: Patients See Hope, Critics Hold Doubt)
To the Editor:

In five weeks I will undergo cytoreductive surgery with HIPEC for cancer of the appendix. It's a daunting and frightening prospect.  I understand this procedure is far more invasive and difficult than two previous surgeries I have been through in the last year.  And the recovery will take considerably longer. 

I am fortunate in that I have an exceptional surgeon (Dr. Laura Lambert of University of Massachusetts Medical Center in Worcester, MA), good sources for support, and contact with six others who have been through the procedure.

While everyone has described a miserable and exhausting experience, not one, with the most direct experience possible, was anything other than positive and encouraging. Unlike the Times article, fear and cynicism was not in their message. The language of the article struck me as crude and provocative.  And treatment of the patient, who was extremely generous in allowing the journalist to witness  his surgery, was nothing short of contemptuous. Slit bellies and waterbeds? 

Cancers of the appendix and peritoneum are rare, research is limited by a lack of funding, misdiagnosis is common, experienced surgeons are few. And cytoreductive surgery with HIPEC, though controversial, offers us the only hope of a cure.  So why print an article that sensationalizes the dangers of the surgery, offers no information on the disease or outcomes of treatment,  and implies (with no supporting evidence) surgeons are doing it for the money.

Cancer is frightening, and  less understood rare cancers are even more frightening. A well researched article that informs is needed, not the shamefully irresponsible one published in last Friday's New York Times.

I hope the Times will correct this injustice to those of us who undergo this surgery and to those who work to treat a truly terrible disease.

Sincerely,
Christine, USA
 
 

In response to comments posted regarding  the New York Times articles examining the pros and cons of the HIPEC procedure, I offer the following observations:

It is with great interest that I observe that none of the individuals who have posted comments are “veterans” of the HIPEC procedure, as am I.

As a patient advocate, with no financial interest or gain from the pharma or healthcare industry, I represent the needs of hundreds of Pseudomyxoma Peritonei and Appendix Cancer patients around the world who credit the HIPEC procedure for saving their lives.

As an incurable patient myself, given a prognosis of 18 months, back in 1998, I was provided with no alternatives with the exception of a series of five grueling debulking surgeries, resulting in more than half of the organs within my abdomen being removed or resected.

In 2006, after being referred to hospice, I was provided with the opportunity to have a sixth surgery, this time with the HIPEC procedure, with Dr David L Bartlett at UPMC in Pgh PA.

Obviously, five years later, I am still alive, as are countless other patients around the world who have benefitted from heated intraperitoneal chemotherapy.

The cost of the HIPEC procedure is relatively inexpensive (averaging $4,000 to $7,000 per treatment, depending on regional costs) compared to the entire cost of hospitalization and surgery ($100,000+.)

The cost of HIPEC, per patient, is certainly less than the cost of an average funeral, as death is the option for those patients who are unable to be treated via surgery and/or chemotherapy.

For those “commenters” who balk at the cost, either for private insurers or MediCare, I ask you “Who are you to place a dollar value amount on MY life? How much is YOUR life worth?”

 I am a very productive person, as are the overwhelming majority of my fellow HIPEC patients, who usually return to the workforce within three months following treatment; as tax payers are we not “entitled” to this medical procedure?

For those “commenters” who insist on waiting years, and in the case of Pseudomyxoma Peritonei patients, to complete clinical trials, please consider this:

 1) Patients don’t have years to wait. Left untreated we will die.

2) The majority of us want to receive the HIPEC treatment, as the treatment approach appears logical and helpful (lifesaving.)

3) Clinical trials are few and far between for patients affected by “orphan” diseases; there are only a few hundred cases, like ours, diagnosed annually, therefore ours is classified as an “orphan” disease.

Patients afflicted with orphan diseases don’t have the “luxury” of vast numbers of patients, i.e. breast cancer patients, to be tested.

Each patient is an individual and although patients may share a common “diagnosis” each case is unique. Patients deserve options for treatment. After a patient has carefully examined his/her options, s/he should be able to make the decision of whether or not to pursue the HIPEC treatment. Thanks to modern access to information regarding the pros and cons of any medical treatment, today’s patients are better informed about their choices.

I have no patience for those who seek to make a profit in the medical industry by charging exorbitant  fees for equipment or services. However, the cost of medical care is a different topic and today our focus needs to be on treating what was previously considered to be an “untreatable” disease.

Patients have a right to, and deserve options, and for many patients, the HIPEC treatment is indeed that option.

Gabriella Graham, Patient Advocate and Founder of the PMP Pals’ Network, www.pmppals.org

 

Articles posted in PMP Pals and on www.pmppals.org are written from the perspective of patients and family caregivers and are not intended to substitute for licensed, professional medical or legal advice. Patients should seek the counsel of their own licensed healthcare professionals regarding their personal, specific needs. Copyright © 2011 by Gabriella Graham/PMP Pals. All rights reserved.

Visit us on the web at www.pmppals.org We have HOPE for YOU!