Topic: Asbestos

On Sunday morning I read about an amazing discovery.  Researchers at the University of Hawai‘i Cancer Center have made a major breakthrough that could help lead to the prevention of mesothelioma.  Dr. Michele Carbone and his team announced they have found a link between a genetic mutation called BAP1 and the development of mesothelioma.  I am constantly encouraged by the on-going work researchers are doing to prevent and treat this deadly disease.  Each and every advancement made in the field of mesothelioma is a new step towards a cure for this disease.

The Study

Researchers studied two families -one in Louisana and one in Wisconsin- for a period of 14 years that had incurred mesothelioma deaths.  The researchers discovered that each family member that had provided a DNA sample and had developed mesothelioma carried the BAP1 gene.  Scientists have found that when people who carry the BAP1 mutated gene are exposed to asbestos their risk of developing mesothelioma is greater.

Mesothelioma tumors are caused by exposure to asbestos.  The tumors develop in the lining of the lungs, abdomen and heart.  Unfortunately, mesothelioma is a terminal cancer and takes the lives of about 3,000 people in the US every year.

Dr. Carbone, MD, PhD, co-leader of this 14 year study and director of the University of Hawai‘i Cancer Center says, “This discovery is a first step in understanding the role of the BAP1 gene and its potential utility when screening for mutations in those at high risk.”  This exciting new discovery will lead to the development of new genetic therapies and treatments in the field of mesothelioma.

Dr. Michele Carbone, MD and Ph. D. in human pathology, was appointed director of the University of Hawai‘i Cancer Center in September of 2009.  Dr. Carbone is considered an authority on malignant mesothelioma.  He and his scientific team extensively study the effect of genetics and environmental carcinogens on the development of mesothelioma.  They are working constantly to develop preventative and new treatments for mesothelioma.

I applaud the efforts of scientists like Dr. Carbone who are constantly making strides to better understand this terrible disease.  In my 33 years of working with clients suffering from mesothelioma I have shared many significant advancements in mesothelioma research with my clients, but this leap forward is particularly remarkable.  Discoveries such as these being made by Dr. Carbone and his team are paving the way for better treatments, prevention and a cure for mesothelioma.

Through representing hundreds of mesothelioma clients and thousands of others with asbestos-related diseases, I have had the privilege to meet and work with some outstanding doctors and researchers.  One of the most, if not the most, extraordinary, was Dr. Yasunosuke Suzuki.  I was deeply saddened to hear that this world renowned, dedicated asbestos research scientist had passed away on August 8, 2011 at the age of 82.

One cannot underestimate the impact that Dr. Suzuki had in the world of asbestos disease.  He was truly one of the pioneers in asbestos research whose work no doubt saved the lives of thousands.  Dr. Suzuki was the last of the so called “Selikoff generation.”   His passing is an appropriate time to reflect on what Drs. Selikoff and Suzuki did in the world of public health as they led the battle against asbestos.

Dr. Suzuki and Dr. Irving J. Selikoff Were Pioneers in Asbestos Research

Dr. Irving J. Selikoff brought public awareness to the hazards of asbestos in his groundbreaking study of thousands of asbestos workers.  He is well known for his work, “Biological Effects of Asbestos,” which was published in the Annals of the New York Academy of Sciences. Dr. Suzuki, educated in Japan as a pathologist, came to live in America at the invitation of Dr. Selikoff to work with him in his laboratory at Mt. Sinai Hospital.

A highly skilled pathologist, Dr. Suzuki, studied the pathology of asbestos-related diseases with Dr. Selikoff.  From the early 1970s, Dr. Suzuki published his findings on asbestos diseases on topics such as asbestosis, the formation of asbestos bodies, and understanding mesothelioma through electron microscopy.  Dr. Suzuki’s work provided the support for Dr. Selikoff’s landmark epidemiological study on asbestos insulation workers.  Together they were pioneers in the field of asbestos medical research. Through his 40-plus year career, Dr. Suzuki published 171 peer reviewed scientific papers with over 100 of them related to asbestos diseases.

Yasunosuke Suzuki Was Highly Knowledgeable About Mesothelioma

In many of my cases, Dr. Suzuki served as an expert witness to confirm my mesothelioma clients’ diagnoses and to explain the pathology of the disease malignant mesothelioma.  Whenever he testified in court, the juries as well as the judges listened carefully and learned all that they could about this horrific and aggressive cancer, malignant mesothelioma.

This Superb Mesothelioma Researcher Will Be Long Remembered

The world has lost a brilliant and superb mesothelioma research scientist who was a kind and caring human being.  Yasunosuke Suzuki will be dearly missed by so many — by his family and friends, by me, and by my many mesothelioma clients and their families.  My mesothelioma clients and their families often did not fully understand how much Dr. Suzuki contributed to the diagnosis and understanding of the disease malignant mesothelioma.  But as their lawyer, I know how each and every one of them benefitted profoundly from his work.

For over 30 years, I have helped clients who have mesothelioma, a cancer caused by asbestos exposure.  Through my years of representing mesothelioma victims, I have become very familiar with the medical issues related to the diagnosis and treatment of this deadly disease.  I have had the opportunity to meet and work with many dedicated doctors and scientists who are not only treating mesothelioma patients, but who are also actively involved in research to find a cure for this disease.

I have written frequently about potential new treatment options that are being discovered to improve the quality of life and increase survival times for mesothelioma patients.  I am especially interested when I see research that shows promise in arresting the spread of mesothelioma cells in the body since that is the beginning of the end of this disease.

Stopping the Spread of Cancer Cells

Nearly 90% of cancer deaths occur when cancer spreads beyond a tumor into areas that are more difficult to treat, such as the lungs or bones.  The ability to stop the spread of cancer is one of the keys to curing the cancer.  Scientists are constantly looking for ways to do this and have found one important key that may help mesothelioma patients.

I recently read that researchers have found that when a protein called Janus kinase, or JAK, is active, it can have very negative consequences for cancer patients as this active protein causes contractions which force cancer cells to be pushed out of the tumor and into other parts of the body.  JAK can also cause healthy cells to build furrows in tissue, allowing cancer cells to move through these furrows.

Drugs are currently being developed to help block JAK, and researchers believe that such drugs could aid in preventing the spread of cancer.  Stopping the spread of cancer cells to other parts of the body will be an exciting new step in treating cancer, especially aggressive cancers like mesothelioma.  Today, we see our mesothelioma clients being treated with cutting-edge treatments that are built on discoveries made through research efforts such as these involving JAK.  Tomorrow, we hope for a cure to this disease.

Battling Mesothelioma on Two Fronts

Mesothelioma, like all cancers, has always been a multifaceted problem.  As with all diseases, the major battlefronts are prevention and treatment.  The research into the way cancer spreads is one of the many ways scientists are attacking this disease and developing treatment options.

Preventing asbestos exposure is also a key element in the battle against this disease.  Asbestos exposure is known to be the cause of mesothelioma.  While asbestos is not presently banned in the US, its use is negligible.  Presently, there are extensive regulatory requirements in place for the removal of asbestos materials.

My firm and I are very passionate about the prevention of asbestos-related diseases, and in particular, mesothelioma.  We are focused on holding accountable the companies that made, sold and used asbestos products without warning of the deadly dangers that they were aware of.  Holding these companies accountable for their wrongdoings has helped to raise awareness of dangers of asbestos exposure and helped to reduce the number of mesothelioma occurrences in the future.

I recently wrote about “Patient Navigators” and how they are working with mesothelioma patients to help guide them through the maze of details and decisions they face as they deal with this devastating disease.  I have represented mesothelioma clients for over three decades and the idea of “Patient Navigators” is a relatively new trend in the area of cancer treatment.  I was especially interested to read an article in Tuesday’s Wall Street Journal about how Patient Navigators, and in particular “Nurse Navigators,” are helping all cancer patients.

At no additional charge, navigators help patients make informed decisions and assist with setting up multiple doctor appointments and tests. Navigators also provide tips on dealing with chemotherapy, make sure patients stay on track with their treatment plan, and offer emotional support.

Accreditation Guidelines Will Require Patient Navigators

There have been significant advances in cancer treatment in the last three decades that have helped to prolong and save millions of lives. But with those advances have come more complex treatment decisions and follow-up options than ever before.  This is especially true when it comes to the treatment of mesothelioma which can involved extensive testing to correctly diagnose the disease and treatments including chemotherapy, radiation, and surgery.  Hospitals have not always been able to keep up with these changes and the need to provide close coordination among doctors and patients. According to the WSJ, Patient Navigation is seen as one solution to this problem.

More and more hospitals are now adding patient navigation services, helped by funding from the government and private groups.  By 2015, cancers centers will be required under new guidelines to offer patient navigation services to meet accreditation requirements.  The Commission on Cancer, part of the American College of Surgeons, issued these new standards which will bring these valuable services to more cancer patients.

Navigation Services Improve Care

The WSJ reported that the National Cancer Institute has studied thousands of patients over the past five years to determine the effects and benefits of patient navigation.   These studies have shown that patient navigation leads to an increase in participation in cancer screening, as well as greater adherence to follow-up care.

Patient navigators also offer a level of support to cancer patients who are sometimes reluctant to share all their fears and concerns with family members. For example, nurse navigators have helped women with breast cancer deal with every aspect of their disease from purchasing a wig before they face the hair lose from chemotherapy treatments to dealing with the fears that accompany any diagnosis of cancer.

Mesothelioma Patients Benefit From Patient Navigation Services

Whether a patient has been diagnosed with mesothelioma or some other form of cancer, patient navigators are a significant help to them. There are certification programs for patient navigators that include training in care coordinating and interviewing skills, with sensitivity to cultural issues. These medical professionals have access to the patient’s medical records as well as to their doctors.  They can help with insurance issues, arrange for translation services, or simply ensure that patients have a ride to their doctors’ appointments.

As my clients struggle with all of the medical and emotional issues that come with a mesothelioma diagnosis, it is reassuring to me to know that they have this additional resource to which they can turn.

I have been a mesothelioma lawyer for over three decades, but I still recall some of the first meetings I had with mesothelioma victims who had been exposed to asbestos while repairing ships at a naval shipyard. I never forget that many of them wanted to know why they could bring a lawsuit for their mesothelioma when they knew many others who had some type of cancer but had no such claims. I realized at that moment how important it is for mesothelioma victims to understand the reasons behind their legal claims.

Mesothelioma-An Avoidable Cancer

Mesothelioma is, and should have been, a completely avoidable cancer.  It is caused by breathing asbestos dust—whether it is asbestos dust in the workplace or asbestos dust taken home to the family on the workers’ clothes.  The asbestos dust is released into the air when workers handle and manipulate the asbestos products as they carry out their jobs.  Once airborne, this deadly dust is breathed by the workers and carried home by them because it settles on their hair and clothing.  The companies who sold products that utilized asbestos knew that breathing asbestos dust was dangerous and potentially deadly.

The relationship between asbestos dust and malignant mesothelioma is one of the most well-proven cause and effects in all of cancer medicine.  Many of my clients become angry and upset when they learn that the industry knew of the dangers of asbestos, but failed to warn about this hazard.

Companies Had a Legal Duty to Warn-But Didn’t

There are laws in each state known as “products liability” laws.  These laws spell out clearly the duties that companies have when they sell products, especially products that utilize a dangerous material like asbestos.  Companies are required to sell products that are safe.  When a product was dangerous because it included asbestos, companies were required to warn about the hazard of breathing the asbestos.  In this way, workers and others had the opportunity to take precautions so that they would not be exposed to this dust.

But my clients never had the chance to protect themselves, or in some cases a loved one at home who contracted mesothelioma as a result of the asbestos dust brought home on the bodies and clothing of the workers.  The companies who sold products that utilized asbestos did not place warnings on their products and equipment about the dangers of asbestos.   As a result, those who have contracted mesothelioma as a result of their unknowingly breathing this deadly dust have legal claims against these companies for the damages they have suffered.

Recoveries from Lawsuit Aid with Expenses of Mesothelioma Treatment

My mesothelioma clients also know firsthand how the recoveries from their lawsuit can be of significance to them and their families. Getting the proper medical treatment for their mesothelioma is both mine and my clients’ top priority.  Treatment for mesothelioma can be very expensive. In addition to medical costs, clients also face the bills and expenses of providing for themselves and their families while they are sick. The recoveries from their lawsuit enable clients to pay these kinds of expenses.  It is important to all of our clients that they do all they can to provide for their families and the recoveries they receive in their lawsuits often gives them great comfort.

My mesothelioma clients and their families who have dealt with this devastating disease all hope that someday there will be a cure for this aggressive cancer.  As a mesothelioma lawyer, I often remind my clients that research is being conducted every day around the country, indeed around the world, in which scientists are searching for a cure for mesothelioma and other forms of cancer.  I urge my client to never lose hope. 

I know that researchers are hard at work discovering new ways to diagnose and treat mesothelioma.  Whenever I read about new medical advances, I find myself being grateful to these dedicated scientists.  I commend researchers like Masaki Nasu, whom I just read about, for his hard work and efforts to find a better quality of life for mesothelioma victims.

Research Shows Drug Inhibits Growth of Mesothelioma Tumor

Masaki Nasu is a young researcher recently profiled in Innovations, the University of Hawai’i Cancer Center’s newsletter.   I read this article with great interest and excitement.  Nasu has been working with a drug called Ranpirnase (Onconase) to treat malignant mesothelioma.  Dr. Nasu’s findings seem to show that Ranpirnase does inhibit mesothelioma tumor growth in his cell culture experiments.

A postdoctoral candidate, Dr. Nasu will be the lead author of a paper that has been accepted for publication in the journal Genes & Cancer.  According to Innovations, his manuscript is called “Ranpirnase interferes with NF-kB pathway and MMP9 activity, inhibiting Malignant Mesothelioma cell invasiveness and xenografts growth.”

Research Offers Hope, Promise, and Someday, A Cure for Mesothelioma

Research such as this provides great hope and promise for the treatment and someday a cure for mesothelioma.  I have been representing mesothelioma clients and their families for 33 years.  It would be wonderful to see a successful treatment regimen developed in my lifetime for people being diagnosed with this devastating disease, malignant mesothelioma.

For over 30 years, I have looked into the eyes of my clients who are suffering from mesothelioma and have seen pain, sadness, and despair that I cannot adequately describe.  The physical pain is excruciating as this cancer constricts breathing and movement as it envelopes the lungs or abdomen, and the treatment options bring even further discomfort.  The sadness in my clients’ eyes is a reflection of what they feel whenever they think of their family and the emotional toll this disease takes on all of them.  And the despair is the result of knowing that there presently is no cure for this cancer.

Mesothelioma through the Camera of Photojournalist Neil Hodge

But what my words fail to capture, photographs can.  I recently became acquainted (via Twitter) with Neil Hodge, a photojournalist from the United Kingdom who has focused his interest and camera on the faces of mesothelioma victims.  Neil has been documenting the lives of people affected by mesothelioma through photography and interviews for the past three years.  He has shared some of his photos with us that capture the suffering of mesothelioma patients.

I was very interested to learn how Neil began photographing mesothelioma patients and reached out to learn his story.  I asked him when and why he undertook to document the lives of mesothelioma victims.  Neil explained in his own words how he got started and some of the difficulties he faced:

“For the past three years I have been documenting the lives of people affected by asbestos-related diseases through photography and interviews. I started my photo-documentary project on people suffering from mesothelioma in 2008, initially focusing on people based in the East Midlands of the United Kingdom – principally around the industrial cities of Nottingham, Leicester, Sheffield and Doncaster. My interest in asbestos-related diseases began largely when I worked as an insurance journalist reporting studies from the likes of Lloyd’s of London that the number of mesothelioma claims/deaths was likely to reach its peak by 2015-2020, and that asbestos-related injuries/pay-outs would then begin to decline. To me, this just never seemed credible: in the UK, the overwhelming majority of buildings still contain asbestos, and while there are regulations in place for employers to monitor whether the material is safe, enforcement is another issue. Therefore, as the material is still present, so is the danger.”

Neil also talked about the challenges and frustrations of trying to document the lives of those suffering from mesothelioma.  It is understandably often difficult for a family to appreciate the amount of access a photojournalist like Neil needs to really tell their stories:

“It was incredibly difficult – and still can be – to photograph people receiving treatment, or to take pictures of them when they are unwell. While sufferers’ families have always supported my work in terms of publicizing that asbestos is still a real danger, they have not always understood how a photojournalist needs to operate and the amount of access I must have to tell the story – that I need to take pictures when people are having surgery, are not feeling well, and are dying. It’s not an easy point to make to relatives who have been told that their father/husband is likely to have just six months to live, and a lot of chemotherapy, radiotherapy, and surgery in between.”

Continuing to Spread Word of Dangers of Asbestos

Neil is continuing to document mesothelioma patients in the United Kingdom, but he has also turned his attention to the use of asbestos in developing countries like India to raise the awareness of the future disease that will result from the use of this deadly material.  I will write more about that in my next article, but for now I want to thank Neil for sharing his photographs with us so we could put faces on this tragedy.  To see more of Neil’s work, you can visit his website at http://www.neilhodge.co.uk or follow him on Twitter @neilhodgephoto.

“There are only four kinds of people in the world: Those who have been caregivers; those who are currently caregivers; those who will be caregivers; and those who will need caregivers.” – Rosalynn Carter 

Mesothelioma is a devastating cancer that affects the whole family and not just the patient.  The caregivers for mesothelioma patients play a critical role.  For many of my clients, their main caregiver is their spouse.  But I also have had many clients who are widowed or never-married or divorced.  For them, a child, a brother or sister, or a niece or nephew usually steps in and takes the primary support role.  

Since the job of caretaker is such an important one, I want to offer some insights I have gained over the past 30 years that may help caregivers navigate this difficult job.  So this advice is directed to all you caregivers who do all you can day in and day out to support your loved one who is facing a cancer for which there is no cure.

Caregiver Truth #1: There is No Training Manual

The truth is there’s no training for how to be a cancer patient’s caregiver.  No one tells you how to perform so many roles all at once: advocate, note-taker, cheerleader, researcher, insurance specialist, financial planner, pain expert, cook and hand-holder.  No wonder studies show caretaking can be a 40-hour-a week job – and sometimes more.

Today, the numbers of families affected are overwhelming.  The American Cancer Society reports 1.4 million people in the United States will receive a cancer diagnosis each year – some 3,000 of them for mesothelioma – which means somewhere in the US, 1.4 million people like you become primary caretakers each year.  This new job is not only filled with worry about your loved-one but also it’s a vivid reminder that all of our lives are fragile and, in the end, way too short.

Caregiver Truth #2: Caregiving is an Exhausting and Difficult Job

I’m betting by the time you read these words, you have already learned Caregiver Truth #2: Just because it’s a labor of love, doesn’t mean being a caretaker it’s easy. It isn’t.  Even the job description can be daunting:

1. Reading everything you can get your hands on about mesothelioma, its treatments and their side-effects
2. Navigating the healthcare and insurance systems (in the beginning this can seem like a full-time job all by itself)
3. Helping find the right doctor and hospital and working with the medical team
4. Setting up doctor’s office appointments
5. Taking care of the details of hospitalizations
6. Arranging for home healthcare
7. Keeping up-to-date as chief note-taker
8. Being your loved-one’s advocate in the system
9. Keeping track of the medicine schedule and pain and nausea levels
10. Making sure your loved one has company and privacy as needed
11. Learning about and getting your financial affairs in order
12. Understanding your legal options
13. Making sure you are both eating healthfully and getting exercise
14. Coordinating the help of family and friends
15. Keeping upbeat!

While you need to keep as positive an attitude as possible to help your loved one, recognize that what you are undertaking is physically and emotionally demanding.  There may be days where you feel completely overwhelmed by the situation.  This is normal and natural and doesn’t mean you care for your loved one any less.  But you too are only human and need to acknowledge the stress this role of caregiver places on you.

Caregiver Truth #3:  No Two Family Members React the Same

But you are not alone in all this. Caregiver Truth #3: Cancer affects the entire family, and, from what I’ve seen, no two people react the same to the situation.  From the time your kids (and even more complicated, your step-kids) hear the news, some will want to jump in with everything they have to give (their time, their hard work, their car, their money) and others will shy away from even discussing it much less getting involved in the care.

I always say mesothelioma can bring out the best and the worst in a person, a couple and a family.  In the very best case scenario, working together to support the loved one can be the perfect chance to heal long-time family rifts.  But don’t expect these miracles to happen overnight.  Try not to judge them but do encourage each one to give what he or she can: Their time to help out around the house, their research skills, visits to play cards and share a few laughs or even their money.  

The main advice I give for dealing with younger family members is not to keep your loved one’s condition a secret.  Older children and teens can understand more than you may give them credit for about the disease, down to its probable cause.  And even the youngest child can understand that Grandpa or Grandma is feeling sick right now and they need to be a little more quiet than usual and not jump on them.  A quiet book to read together or a shared meal and a talk about their school day may be all that is needed to put the child at ease.  Afterwards, you will want to honor their questions and not squelch their fears or their tears.  After all, they’re not all that different from how you are feeling too.  Many children and teens act out when a family member gets a cancer diagnosis.  So it’s best that teachers and counselors are informed, as well as any other caring adults in their lives.  My clients report that counseling by a child psychologist or a member of the clergy is often a big help for their kids and grandkids.  Many communities have family-friendly cancer support groups.  The nurse at the oncologist’s office or the hospital social worker may know about the ones in your area. 

Accept “Respite Care”

One of the greatest gifts someone can give you is something called respite care.  By coming over and playing a game of Monopoly or watching a movie with your loved one, they allow you to get away for a spouse support group meeting, a dinner out with friends, an hour at the library, a special day with a grandchild or a class to learn yoga or regenerate your own faith.  

Caregivers also say that even a couple hours away can recharge their energies so they’re able to be loving and cheerful with their loved-one.  Still, they remind me, though positive thinking is a plus, it’s important to let the person talk honestly about everything from how they feel physically and emotionally to their sense of lost dreams and lost independence.  Try not to brush off their talk of death and, above all, remember that tears – yours or theirs – are not a sign of weakness.  Reassuring them that they are not alone, and still have value is so important now, as is emphasizing those things they still can look forward to.