Mesothelioma Cancer Alliance Blog Commentary on mesothelioma and asbestos exposure at Navy Shipyards and other jobsite locations. en-us The Growing Global Asbestos Trade Emily Walsh Wed, 09 Aug 2017 04:00:00 GMT So many people still believe asbestos is a thing of the past. It was used in construction and various products for centuries, and countless individuals believe now that its dangers are known, the toxin has been banned. Sadly, that couldn’t be further from the truth. Not only is asbestos still being used in approximately 70% of the world, but some countries still rely heavily on the import and export of the mineral. Asbestos Exposure Mesothelioma Mesothelioma Diagnosis Outreach & Awareness

So many people still believe asbestos is a thing of the past. It was used in construction and various products for centuries, and countless individuals believe now that its dangers are known, the toxin has been banned. Sadly, that couldn’t be further from the truth. Not only is asbestos still being used in approximately 70% of the world, but some countries still rely heavily on the import and export of the mineral.

While the United States thankfully doesn’t have a booming asbestos market these days, it’s still actively being used in a few industries. The mineral isn’t banned and can be used in certain new products as long as its presence is only up to one percent. Along with these current uses, it can still be found in natural deposits and thousands of buildings and homes throughout the country.

More countries are joining the efforts to reach a global ban and help eliminate the health risks like mesothelioma that asbestos can cause. However, there is still a long way to go, especially in the face of countries like Russia with a booming asbestos industry.

Asbestos Use in the U.S.

Though asbestos is nowhere near as important in the United States as it once was, it’s still actively being used. Many people consider the main concern with asbestos to be its past, hidden in the construction of old buildings that made use of a variety of asbestos products. While these legacy uses are a great threat to the public’s health, asbestos is still being imported into the country for several uses.

In June, the Environmental Protection Agency (EPA) released a first look into their investigation of the first ten chemicals being evaluated for unreasonable risk to public and environmental health, including asbestos. The EPA was given the authority to conduct risk evaluations of ten chemicals and more each year after the signing of the Frank R. Lautenberg Chemical Safety for the 21st Century Act in 2016. Though it could still take years to potentially ban any of these chemicals on the list, it’s a step in the right direction for a ban.

In this initial scoping document, we learned that about 340 metric tons (749,572 pounds) of raw chrysotile asbestos had been imported in 2016. The asbestos was imported primarily from Brazil, which the United States Geological Survey (USGS) notes has been the main source for the U.S. since 2012 as well. However, the amount imported has dropped significantly since then. In 2012, the USGS estimated an import of 1,610 tons, which decreased to about 772 tons the following year. At its peak use back in 1973, the United States consumed 803,000 tons of asbestos.

Today, the imported asbestos is primarily used for the chlor-alkali industry in the creation of semi-permeable diaphragms. The EPA also noted a current known use of asbestos in the creation of sheet gaskets for the chemical industry. Researchers at the USGS, however, expect the industry’s asbestos use to continue to decline as more consumers seek out non-asbestos diaphragms and products instead.

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Asbestos Trade Around the World

There are only about 60 countries so far that have banned the toxin, with a few others like Canada expected to make a full ban in the not-so-distant future. But there are still several big players in the world who have a growing asbestos market that doesn’t appear to be slowing down anytime soon.

Russia is the biggest exporter of asbestos, estimated to have exported about 56% of the asbestos used in 2015. As the biggest supplier of asbestos, a report estimated Russia’s exports to be worth approximately $191 million U.S. dollars. The total global trade for 2015 was estimated to be $344 million U.S. dollars.

Asbestos was once considered a miracle mineral in the United States, and remains to be in Russia. The country even has a city called Asbest, which is Russian for asbestos. Residents have described layers of asbestos dust throughout the city and in their homes. Despite its dangers, asbestos is the city’s pride and drives their economy.

After Russia, the asbestos industry has been steadily growing in China and India. From 2007 to 2015, China’s exports increased by over 39% each year and India’s grew by nearly 8% each year. These two countries along with Brazil and Kazakhstan made up the remaining 44% of asbestos exports for 2015.

At the most recent estimates, reports show Russia produced over 1 million metric tons of asbestos in 2014, while China produced 400,000 tons that year. India only produced an estimated 270 tons, but imported nearly 380,000 tons of the mineral. The other leading countries, Brazil and Kazakhstan, produced 284,000 tons and 240,000 tons, respectively.

Hoping for a Global Ban

The thousands of tons of asbestos being consumed and produced by these countries, as well as the increasing worth of the trade, highlights the difficult road ahead for ever reaching a global ban on the toxin. Asbestos is an important good for these and many other countries around the world, and the market is alarmingly growing each year.

Researchers estimate at least 107,000 people die from asbestos-related diseases around the world each year. Another estimated 125 million people are exposed to asbestos at work each year and face the risk of these deadly diseases. Unfortunately, these dangers are overlooked or simply unknown by so many people. Without a ban, many more lives are at stake.

Despite the uphill battle, advocates around the world are working hard to make a difference. Thankfully, the number of countries banning the toxin is slowly growing, with countries like Canada and Taiwan expected to make a full ban by 2020. Hopefully with more awareness and the continued efforts of these advocates and agencies, the slow and steady progress will pick up the pace and put an end to this deadly industry.

Catching the Criminals: Mesothelioma Victim Frank Bender’s Legacy MCA Warrior Stories Wed, 26 Jul 2017 04:00:00 GMT Most sculptors hope to have their work prominently displayed in a gallery or museum. But for Philadelphia native Frank Bender, his biggest hope for his sculptures were to identify homicide victims or the fugitives responsible. Asbestos Exposure Mesothelioma Mesothelioma Diagnosis Military & Veterans

Most sculptors hope to have their work prominently displayed in a gallery or museum. But for Philadelphia native Frank Bender, his biggest hope for his sculptures were to identify homicide victims or the fugitives responsible.

Bender stumbled upon a career as a forensic sculptor after being unable to find a night class teaching anatomy at the Pennsylvania Academy of Fine Arts. He enlisted the help of his friend who worked at the morgue, and realized he could help “recompose the decomposed.” For the next 30 or so years, Bender worked with the FBI, Scotland Yard, and “America’s Most Wanted” to help identify dozens of victims and fugitives.

But in the midst of his career helping so many others, Bender received devastating news. His wife’s lung cancer had returned. A few months later, he received more bad news. Bender learned he had stage 4 pleural mesothelioma. His doctors gave him a prognosis of about 8 months.

Despite these poor circumstances, all Bender wanted to do was keep helping others.

Exposed to Asbestos in the Navy

Before pursuing a fine arts career, Bender served in the U.S. Navy from 1959-1961. During this time, he worked on two Navy destroyers. Bender often made repairs in the engine room. As his unit was most often sailing, he also would sleep aboard the ship in the laundry room, typically surrounded by clothes covered in various toxins.

Throughout the military, asbestos was heavily used, but Navy veterans are even more at risk of exposure because of its prevalence in building navy vessels. Asbestos can be found in almost any part of these ships, but especially in areas like the engine and boiler rooms where the equipment would need to be able to withstand high heat.

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As someone working in the engine room making repairs, Bender was surely exposed to asbestos frequently. Many of these types of repairs would involve disturbing the asbestos-containing materials in some way, thus releasing the fibers into the air. With such tight quarters and poor ventilation on these ships, the fibers could become more concentrated in the air.

Since Bender and the rest of his unit often lived on the ship, asbestos and other toxins used in its construction and any equipment stored on the ship were a constantly looming danger for them.

A Legendary Career

After his stint in the Navy, Bender began pursuing a fine arts career initially as a photographer. He eventually found his way to the morgue, and realized he knew what an unrecognizable corpse looked like despite several gunshot wounds to the face. From that moment on, Bender started to hone his skills for reconfiguring victims' faces, as well as using old photographs and other evidence to create sculptures of fugitives who escaped years ago.

The police would occasionally send Bender skulls from cold cases and other crimes to see if he could help identify the victim after DNA evidence or dental records failed. Bender had a knack for envisioning a victim’s character and features based on tiny details. Bender once estimated his success rate of identifying victims and killers at around 85%.

One of his most famous successes came through his work for “America’s Most Wanted.” The show asked him to create an updated sculpture of murderer John Emil List, who had killed his wife, mother, and three children in 1971 before disappearing. The show commissioned the bust 18 years later, and Bender worked on creating a sculpture of what the accountant would look like based on old photographs.

Bender’s depiction showcased a jowly man with a receding hairline, complete with thick glasses. A woman watching the broadcast recognized the man as her neighbor going by the name of Robert Clark. A few weeks later, he was arrested and his fingerprints correctly identified him as the murderer.

During all these years of helping catch the bad guy, the asbestos fibers inhaled decades ago during his Navy career slowly took their toll on his body. The effects of asbestos exposure can take anywhere from 10 - 50 years to begin to show symptoms. Sadly for Bender, his disease spread aggressively before it was even detected.

Discovering Late-Stage Mesothelioma

Shortly after his wife’s recurrence of lung cancer, Bender received his own diagnosis. The cancer originated in the lining of his lungs, but as it progressed to a later stage, the disease spread throughout his chest and abdomen. Tumors surrounded much of his heart and ribs.

At this point in the disease, treatment options are extremely limited. Since the tumors have metastasized, curative treatment is generally not an option anymore. Instead, patients may seek palliative options to relieve some of their symptoms and provide a better quality of life. While even stage 1 mesothelioma has a poor prognosis, by this stage most patients are only expected to live one year or less.

Despite his poor prognosis and a lot of pain, Bender continued to work and even took on the role of his wife’s caregiver during her own battle. Even after entering hospice shortly after his 70th birthday, Bender could only worry about the road ahead for his daughters and how difficult it would be for them potentially losing both parents. No matter what circumstances he was facing in life, he always put others first.

Sadly, both Bender and his wife succumbed to their cancers a little more than one year apart, but neither will be forgotten. In one of his last interviews, Bender said he wanted to be remembered for all he did to try to help people. After such a prolific career and his personal life as a family man, it’s certain he’ll always be remembered in that way.

Scientists Discover Possible Genetic Link for Mesothelioma in Young Adults Jackie Clark Thu, 20 Jul 2017 04:00:00 GMT The link between a cancer diagnosis and one’s genetics has been an important aspect of research for years. Many think of the link in terms of hereditary cases, that is if a type of cancer runs in the family because of a certain gene mutation. But the role of genetics in cancer goes far beyond deciding a person’s inherited risk. Mesothelioma Mesothelioma Diagnosis Mesothelioma Survivors Mesothelioma Treatment

The link between a cancer diagnosis and one’s genetics has been an important aspect of research for years. Many think of the link in terms of hereditary cases, that is if a type of cancer runs in the family because of a certain gene mutation. But the role of genetics in cancer goes far beyond deciding a person’s inherited risk.

Mesothelioma is known to be caused by exposure to asbestos, but more studies have come out recently that help determine how genetics may influence the disease. Last year, researchers at the International Mesothelioma Program (IMP) published their study on the gene-sequencing of mesothelioma tumors. The study opened the door for the development of more personalized therapies to respond to a specific tumor’s genetic makeup in an individual.

Researchers have also been looking further into the connection between the BAP1 gene and mesothelioma. Researchers found those with the BAP1 gene and a family history of cancer typically developed mesothelioma earlier and had improved long-term survival compared to others. This connection could help lead to earlier detection of the disease and better treatment for future patients.

A new study further investigated the role of genetics in malignant mesothelioma patients under the age of 40. Researchers wanted to learn more about particular gene fusions, how often these fusions occurred, and the clinical symptoms they caused.

Studying Genetics in Malignant Mesothelioma

The study looked at both peritoneal mesothelioma and pleural mesothelioma patients under 40 years old. Researchers looked at the genetics of 25 patients altogether with a median age of 31. The study sought to determine the incidence of rearrangements on the EWSR1 gene in mesothelioma patients, since previous mutations of the gene have been found in older peritoneal mesothelioma patients.

To explore the patient's’ genes, situ hybridization was used. Situ hybridization is a powerful tool that allows a particular nuclei to be localized and obtain information about a gene expression and its positioning on a chromosome. There are two basic ways to study RNA and DNA data in situ hybridization, chromogenic (CISH) and fluorescence (FISH). This study used FISH because it can provide a bigger picture and information for multiple genes at once.


FISH works by using fluorescent probes that bind to particular chromosomes. It can reveal the absence or presence of DNA sequences, or can be used to study RNA targets to reveal gene expression. For this study, researchers made artificial chromosome probes for the EWSR1, FUS, and ATF1 genes. Prior to beginning this clinical trial, researchers had found evidence of an EWSR1-ATF1 gene fusion in 2 malignant mesothelioma cases, and wanted to understand its prevalence, as well as its impact on the symptoms and pathology of the disease.

The researchers also screened for the BAP1 gene when possible, since earlier studies found that the presence of this gene often indicated earlier development of mesothelioma and longer survival than patients who didn’t exhibit the gene mutations.

Finding More Gene Fusions

Through these screenings, researchers found a few different fusions in patients’ genes. In four patients, 16% of the participants, the ATF1 gene was found with the EWSR1 or FUS genes as partners. These gene fusions have previously been linked to other diseases, like clear cell sarcoma.

Of the patients who exhibited one of these gene fusions, researchers also noted their mesothelioma displayed a classic epithelioid morphology. This is the most common cell type of mesothelioma, generally found in 50 - 70% of all mesothelioma cases. Since it is most common, it has also been the most researched to find effective treatments, like immunotherapy and gene therapy. Hopefully, continued studies like this one to further explore the mutations linked with mesothelioma can help make these emerging treatments more effective.

For the patients in which the BAP1 gene could be screened, 3 of the fusion-positive cases demonstrated the gene and 80% of the other participants also exhibited the BAP1 gene. Many studies now have shown BAP1 expression as being a strong risk factor for mesothelioma.

Overall, the researchers explained the study expanded the scope of genetic mutations associated with mesothelioma. This study also gave a unique insight into mesothelioma among younger patients and how genetics may impact their case. Hopefully with further study, researchers can continue to better understand the links between these mutations and mesothelioma tumors.

Genetics and Mesothelioma

While none of us can control or really combat any of these genetic abnormalities, discovering these mutations can still help patients. With further study, it’s possible these genetic mutations could serve as markers for the disease. Overall, this could potentially mean better ways to detect and diagnose mesothelioma earlier, which could have a great positive impact on survival.

Understanding the genetic differences could also help researchers and oncologists explore new treatment options, like the potential of gene therapy. Though there is still a lot of research and development ahead for these treatments and even better understanding mesothelioma, these studies provide hope for longer survival for mesothelioma patients and patients of other cancers displaying gene mutations.

Medical Marijuana for Cancer: What to Know Jackie Clark Wed, 19 Jul 2017 04:00:00 GMT Herbs and plants were the original treatments for many illnesses and injuries people faced. As such, cannabis or marijuana use dates back centuries. It popped up in Western medicine in the 19th century as a means of relieving pain, inflammation, and spasms. Cancer & Caregiving Health & Wellness Mesothelioma Mesothelioma Diagnosis Mesothelioma Treatment

Herbs and plants were the original treatments for many illnesses and injuries people faced. As such, cannabis or marijuana use dates back centuries. It popped up in Western medicine in the 19th century as a means of relieving pain, inflammation, and spasms.

Today, marijuana use can spark some serious debate, even when considered for medical use only. But regardless of how you feel about its use, more cancer patients are turning to marijuana for a number of reasons.

Marijuana is not legal for use everywhere and researchers have their own concerns about potential side effects. For some patients, however, the benefits can be invaluable as they go through treatment. Patients with mesothelioma, a rare cancer caused by asbestos, typically face a grueling treatment plan, and some have turned to medical marijuana to help cope.

Why Patients Turn to Marijuana

These days, more patients have come forward lauding the benefits of medical marijuana as an asset during their cancer treatment to help cope with side effects. For those with mesothelioma, since the cancer is so aggressive they often face an equally aggressive treatment plan that can take its toll on the body. Being able to manage these side effects is an important part of mesothelioma patients’ care plan to ensure the treatment is as effective as it can be.

Many patients decide to use medical marijuana to manage their pain. Some researchers have likened medical marijuana to the use of opioids, the strongest pain reliever. Medical marijuana may help ease moderate to severe pain, and may even act as an anti-inflammatory for some patients. In some cases, it may also help with nerve damage or neuropathy. Neuropathy is a common side effect of chemotherapy and other cancer treatments, resulting in numbness, tingling, or a burning sensation.

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Other patients turn to marijuana to help with the nausea and vomiting that may occur from chemotherapy. It can potentially help increase patients’ appetites who are experiencing anorexia or cachexia, unintentional weight loss, as a result of their cancer or treatment plan.

Patients may also find sleep and anxiety relief from marijuana usage. Many patients experience sleep disorders as a result of anxiety, pain, or the medications they’re taking. Rest is a very important aspect of cancer treatment, and for some patients marijuana has proved invaluable in helping them relax and sleep better.

In general, patients who use and benefit from marijuana say it allows them to have a better quality of life and stay more positive. Long-time mesothelioma survivor Stephen Jay Gould believed keeping a positive attitude is essential in fighting cancer. He used medical marijuana to cope with the nausea caused from his treatment. He credited the drug for helping him stay optimistic during his treatment, and thus become a survivor.

Marijuana usage itself can have some side effects depending on the strain used and how much patients consume. Some patients might experience dizziness, paranoia, hallucinations, slowed digestion and increased heart rate.

Studies Around Marijuana and Cancer

Research around the medical uses of marijuana for cancer patients is generally limited. There have been a number of preclinical or laboratory studies, as well a limited number of clinical trials involving marijuana as a means to reduce some treatment side effects.

Preclinical studies have looked into potential antitumor effects of marijuana and its influence on cancer side effects. A few studies have suggested its use could help inhibit tumor growth, and possibly even kill cancer cells while protecting the body’s normal cells, although this evidence is inconclusive. Other similar preclinical studies observed the use of cannabinoids, a resin from cannabis plants, with cells of specific cancer types including breast cancer and liver cancer. These studies showed the plant helped protect normal cells, while killing cancer cells in the body.

Clinical studies around its use have so far mainly focused on how it may help with symptoms or cancer treatment side effects. These trials have looked into cannabinoids’ influence on nausea, stimulating appetite, pain relief, anxiety, and sleep. Researchers saw mixed to positive results in their studies and stated further study would be required.

While many cancer organizations, like the American Cancer Society, don’t have a particular stance on the use of medical marijuana, they encourage continued study to see how it might benefit cancer patients.

Regulations Around Marijuana Usage

According to federal regulations, marijuana is classified as a Schedule I substance under the Controlled Substance Act. Other Schedule I drugs include heroin and LSD. These substances are so classified under the justification that they can warrant human dependency and are deemed to have no current medical uses.

But acceptance among the states is on the rise. California became the first state to allow medical usage upon the passage of Prop 215 in 1996. In more recent years, more states have been passing their own laws allowing marijuana for medical use only. Currently, 29 states as well as the District of Columbia, Guam, and Puerto Rico have comprehensive public medical marijuana programs. To be considered a “comprehensive plan,” the regulations typically include:

  • Protection from any criminal penalties for possession and use of marijuana for medical reasons;
  • Marijuana access through home growth, dispensaries, or select other methods;
  • Allows a variety of strains, including those above a low THC level; and
  • Allows smoking or vaporization of various marijuana products.

Another 17 states allow for "low THC, high cannabidiol (CBD)” products for limited medical situations. Recently in Montana, a new bill was introduced that could limit patients’ access to medical marijuana. The state currently does not allow dispensaries, requires patients to have an ID card, and limits usage to certain medical situations. Should the law pass, it would be difficult for mesothelioma and other cancer patients to obtain medical marijuana from small providers.

The laws among all these states that allow some sort of usage vary, so patients will need to learn the specific regulations for where they live.

Regardless of any personal feelings around marijuana use, medical marijuana has had a positive influence for some cancer patients. With time, there will likely be more studies to better learn about its effects and any potential benefits.

How to Stay Safe During Asbestos Cleanups David Haas Fri, 14 Jul 2017 04:00:00 GMT Stories about asbestos seem to be a permanent fixture in the news. Communities across the nation discover asbestos in various buildings and schools or hear about asbestos being improperly disposed of. It’s a serious threat that won’t disappear easily. Asbestos Exposure Mesothelioma Outreach & Awareness

Stories about asbestos seem to be a permanent fixture in the news. Communities across the nation discover asbestos in various buildings and schools or hear about asbestos being improperly disposed of. It’s a serious threat that won’t disappear easily.

Asbestos cleanup projects occur frequently, and oftentimes seemingly right under a community’s nose. While the news might cover instances of what’s gone wrong or more major impacts of asbestos being found in a school, the average cleanup may not get any coverage at all.

Hearing about asbestos lurking nearby can cause some people to panic. After all, airborne asbestos can cause mesothelioma and other serious diseases. While there are strict laws in place federally, as well as on state and local levels, as to how asbestos must be handled and disposed of, the average citizen can also take their own measures to help ensure their loved ones stay safe and in-the-know.

Asbestos Removal Process

Asbestos abatement can range from a rather simple encapsulation job of undamaged asbestos-containing materials to the most dangerous removal where the asbestos has already been disturbed and become friable. These different classes of removal have their own regulations for how workers handle the job itself, as well as practices that must be followed to keep the workers safe from exposure.

These projects typically begin with an inspection by a certified professional. An inspector can assess the extent and condition of any asbestos-containing materials. The inspector can also perform an exposure assessment to determine the class of work and ensure all the proper precautions will occur at the asbestos work site.

According to the Occupational Safety & Health Administration (OSHA) regulations, monitoring on the sites is also necessary periodically to ensure acceptable permissible exposure limits (PEL) throughout the job’s entirety.

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Each class of asbestos removal has different compliance measures, but in general these projects must remain covered and secured to the specific zone that has asbestos-containing materials. Workers must use wet methods to prevent asbestos fibers from becoming airborne while they work. Sweeping is prohibited, as this can circulate any particles or potentially spread the dust to other areas. Instead, only HEPA vacuums should be used for cleanup of that kind.

All of the materials must be safely contained after removal, as well as all equipment used and workers’ clothing to prevent contamination in areas outside of the work zone. Asbestos waste materials must be sealed in impermeable bags or containers and properly labeled. After the removal of the materials or encapsulation is complete, the area must be thoroughly cleaned and re-assessed to ensure the danger has been eliminated.

These removal standards will also ring true for homeowners of an older home that may contain asbestos. For homeowners who are considering renovations and are worried about asbestos, they should first contact qualified asbestos professionals to assess the situation.

Protections for the Community

While the OSHA standards mentioned above relate directly to the workers in the asbestos sites, these regulations and others can also help protect the public from possible exposure.

One of the main asbestos regulations in place to help prevent exposure is the Asbestos National Emission Standards for Hazardous Air Pollutants (NESHAP) under the Environmental Protection Agency. The NESHAP falls under the Clean Air Act and specifies work practices for any renovations or demolitions of any structures that contain a certain amount of asbestos, much like the OSHA regulations to protect employees.

Before any construction work can occur, these sites must notify the proper agency that ensures NESHAP is being followed, which is usually a state agency. The building owner will have to abide by any specified regulations for the cleanup and disposal of the asbestos.

Unfortunately, some states follow only the basic guidelines of NESHAP for these projects. At a minimum, there will be a thorough inspection of the site and detailed work practices to control asbestos emissions. There are many states though that have developed additional regulations to further protect workers and the community. For example, California heavily regulates asbestos in terms of its use, how it affects air quality, and its removal.

Communities can also be more aware of construction projects going on, since asbestos cleanups must be marked. These regulated areas must have appropriate signage around the work zone itself as well as outside the space to protect others from potential exposure and minimize contact with the space. The signs must be visible and easily understood. Per law, the signs must state: “DANGER / ASBESTOS CANCER AND LUNG DISEASE HAZARD / AUTHORIZED PERSONNEL ONLY / RESPIRATORY AND PROTECTIVE CLOTHING ARE REQUIRED IN THIS AREA”


Communication and awareness are key for the safety of everyone in these asbestos cleanups. It’s extremely easy for exposure to occur, and no amount of exposure to the toxin is considered safe. Building owners and asbestos professionals must carefully abide by these guidelines to protect themselves and others.

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Steps You Can Take

While there are strict laws in place to protect both workers and the general public, that doesn’t mean shady business practices don’t ever occur. For example, earlier this year a news story came out about an asbestos professional falsifying documentation on an abatement job. We can take steps to help protect ourselves from asbestos during these cleanups.

Be Informed: As they always say, knowledge is power. Learning about the dangers of asbestos and proper practices around its removal can help protect you and your loved ones from any ongoing asbestos cleanup. Keeping up with upcoming or ongoing construction projects in older buildings and schools in your hometown can also help you stay on top of any potential asbestos threat. Some state and local government sites will also give citizens the means to look up ongoing asbestos projects in the area.

Know Your Rights: Being aware of your legal rights when it comes to asbestos can help you take extra precaution and help ensure these projects are being handled properly. If you live or work in a building that contains asbestos, your landlord or employer should inform you of its presence and where it’s located. They should provide reports on its condition and any plans for construction or repairs. When any renovation will occur, tenants must be informed, as well.

Additionally, schools that contain asbestos must have an abatement management plan in place by law. You can request to see the plan at any time that you might have concerns and it must be shown within 5 days of such a request.

Raise Awareness: Use your voice in your community and beyond to help protect others. Being aware of asbestos is an important aspect of preventing mesothelioma and other deadly diseases. Teaching others about the toxin and where to find it can save a life.

While asbestos is more strictly regulated than it used to be, until it is finally banned and removed, it’s remains a serious threat we all must be more vigilant of.

Dr. Raja Flores Explains the Tools Used in Mesothelioma Surgery Staff Tue, 11 Jul 2017 04:00:00 GMT Dr. Raja Flores, professor and chief of thoracic surgery at Mount Sinai Medical Center in New York City, knows that treating mesothelioma is more than a simple surgery. Though surgery is a common treatment for many mesothelioma patients, the process is not nearly as simple as going in and removing the cancerous tissue. Mesothelioma Mesothelioma Diagnosis Mesothelioma Survivors Mesothelioma Treatment

Dr. Raja Flores, professor and chief of thoracic surgery at Mount Sinai Medical Center in New York City, knows that treating mesothelioma is more than a simple surgery. Though surgery is a common treatment for many mesothelioma patients, the process is not nearly as simple as going in and removing the cancerous tissue.

Mesothelioma most often forms in the lining of the lungs, but it can also develop in the lining of the chest or the lining of the heart. For many patients, the rare disease isn’t found until it has already developed to a later stage where surgery may no longer even be an option. For patients who do undergo surgery, they most often face a multimodal form of treatment and will also undergo chemotherapy, radiation, or both.

Though it can be a complex process, Dr. Flores believes surgery is often the best option for survival, and using the right tools is essential to a successful operation.

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Tools to Treat Mesothelioma

“When I see the patients, they are already symptomatic,” Dr. Flores explained. “They are short of breath, their cancer is growing.”

Dr. Flores is considered a leading expert in the research and treatment of pleural mesothelioma, which develops in the lining of the lungs. The symptoms often begin with shortness of breath, chest pain, or a dry cough, which can easily lead to a misdiagnosis of more common ailments. This coupled with the latency period of 20 – 50 years before symptoms begin to show leads to most patients facing a rather dire prognosis of 12 – 21 months.

The current standard treatment for pleural mesothelioma is surgery. Depending on the severity of the disease, surgeons may consider surgery with curative intent or as a palliative treatment for those whose mesothelioma has progressed. Either way, no mesothelioma surgery is exactly the same and understanding the best option for an individual’s case is crucial for a patient’s chance of survival and quality of life.

In its most simple form, Dr. Flores explained, “As a surgeon, what I do is I go in there and I cut out the tumor. Most patients will need a combination of surgery, radiation, and chemotherapy afterwards. Now we are starting this trial using immunotherapy for mesothelioma, but that is still in the early stages.”

For doctors, many of the tools enlisted to treat patients are tangible. For example, Dr. Flores enlists scissors to cut through tissue, hands to strip the wall, aquamantys, the usual bovie, and Gore-Tex patches (both thin and thick) as some of the standard pieces of equipment before proceeding with surgery. Experience and extensive knowledge of the disease, however, may be the most important tools a doctor needs for a successful surgery.

Even with a successful treatment, it’s difficult to ever say a patient is cured of mesothelioma. Dr. Flores explains, “I am hesitant to use the word ‘cure’ because we are convinced that there will be microscopic tumor left behind, so you need to add radiation and/or chemotherapy, so I would rather use the word curative intent.”

But even though there is no cure for mesothelioma and sometimes treatments may not be as successful as hoped, Dr. Flores has a more optimistic outlook. “As a surgeon I am biased,” he says, “I treat this with surgery and all of my survivors are people who have had surgery.”


Working Together for Survival

One of the greatest tools researchers and doctors have is each other. Mesothelioma is a challenging, complex disease. With better data sharing and more collaboration, doctors can continue to improve current mesothelioma treatment options and improve emerging therapies, like immunotherapy, that show promise for the future.

“Since it’s such a rare tumor, I think the patients should see doctors who are really experienced in this field and I think the same goes for the new doctors. They should pair themselves up with doctors who are already experienced because you don’t want to reinvent the wheel,” Dr. Flores insisted. “When you reinvent the wheel, patients get hurt. You want to learn from the people who are experienced in this procedure, so that you don’t make the same mistakes and hurt these patients just because there are so few of them. You want to go to someone who has a large experience of treating this disease.”

Although mesothelioma is a malignant force that has life changing consequences on anyone it touches, the mesothelioma community is a tight knit one that offers and provides heaps of love and support to those in need. With insights from professionals such as Dr. Flores to success stories and inspiration like that of Heather Von St. James, the fight against mesothelioma is stronger than ever and only continues to grow stronger. Knowing which tools are necessary to attacking mesothelioma is the first step. Picking up those tools and using them comes next.

Affordable Long-Term Lodging for Cancer Patients Jillian McKee Wed, 05 Jul 2017 04:00:00 GMT Patients and their families spend millions of dollars each year on lodging and transportation or travel for treatment. These travel costs accumulate fast, on top of the mounting medical bills for the treatment itself and normal household bills. For the average family, these costs can quickly become too much to handle. Cancer & Caregiving Legal and Financial Help Mesothelioma Mesothelioma Diagnosis Mesothelioma Treatment

Patients and their families spend millions of dollars each year on lodging and transportation or travel for treatment. These travel costs accumulate fast, on top of the mounting medical bills for the treatment itself and normal household bills. For the average family, these costs can quickly become too much to handle.

But for many patients, especially those diagnosed with a rare cancer like mesothelioma, travel is unavoidable. Specialists for these cancers are few and spread out across the country, so it can be difficult to find the best care close to home.

Since the cost of cancer treatment continues to rise and isn’t slowing down anytime soon, patients and their families need help to keep up with all these expenses. Fighting cancer requires a support system, and a family shouldn’t have to be apart from their loved one at a time when they need each other most just because it’s too expensive.

Fortunately, there are some options for families to reduce some of this financial strain and added stress.

Hospital and Cancer Center Accommodations

The hospital or cancer clinic in which a patient is receiving treatment may offer various solutions for families to find affordable long-term lodging. Many hospitals have deals with local and surrounding hotels to provide a long-term stay at a reduced rate. This can, however, still be too expensive for many patients to handle. Some may also run into issues with booking a room for a long period of time, and may find themselves having to switch rooms or hotels in the event of a busy season.

Some hospitals also offer their own hospitality housing for family members of patients undergoing care for cancer or other diseases. Many have some basic eligibility criteria for the patients or family guests depending on the circumstances of the stay, including:

  • Length of commute from their home to treatment facility (e.g., at least an hour away)
  • The patient is actively in treatment
  • Having a permanent address to return to after treatment is finished
  • Guests’ ability to care for themselves, as these facilities generally don’t provide their own healthcare support
  • Patients and guests being free of any infectious conditions that could put others at risk

These requirements and accommodations available will vary, so it’s important to make sure you have all the details from the hospital first. In most instances, being able to book lodging at these hospitality houses can only occur through a referral from a patient’s social worker at their medical center.

It’s also important to keep in mind there may be a waiting list at these facilities depending on how many patients they can accommodate at one time. Patients and their families may need to find other options depending on their needs and treatment schedule.

Need help paying for mesothelioma-related travel? See your options…

Nonprofit Organizations

Patients can also find a variety of organizations that offer free or reduced rates for lodging near hospitals and cancer centers. There are national resources, as well as state-specific organizations that can help patients and their families find the appropriate lodging for their needs.

One such resource patients can use is the Healthcare Hospitality Network (HHN), a national nonprofit with almost 200 different lodging options and support services around the country. The network features a variety of home settings from small, private accommodations to houses that can host 100 or more patients at one time. HHN is dedicated to fitting any patient’s unique needs, and creating a supportive community of patients during such a hard time.

The American Cancer Society also offers patients free lodging through their Hope Lodge program. There are currently 32 Hope Lodges located throughout the United States and Puerto Rico, and they’re actively working on building more to help the growing number of cancer patients and their loved ones. These Hope Lodges offer patients and their caregivers a comfortable, home-like environment where they can retreat to private rooms or seek support in a common area. In 2014 alone, the Hope Lodges were able to help over 44,000 patients and their families, which saved an estimated $36 million in lodging expenses.

Joe’s House is another nonprofit resource available to patients in need of affordable lodging. They have a network of lodging partners that offer reduced rate lodging facilities for cancer patients or those needing treatment for any diagnosis. Joe’s House allows patients to search for lodging based on rate or proximity to a particular healthcare facility.

Just like with the medical center programs, each of these lodging facilities have their own eligibility criteria and might also face long waiting lists. Patients and their caregivers should be sure to research each option and speak with their social worker to determine what’s available and the best deal for their individual needs.

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Affordable Transportation

Patients and their families should also look into organizations that can help with affordable travel and transportation needs. If a specialist lives far away from a patient’s hometown, it can become expensive traveling back and forth for treatments and procedures. Various organizations offer reduced price or free airfare for cancer patients and their caregivers.

Organizations like Corporate Angel Network, Angel Flight, and Air Charity Network all provide free transportation for patients facing cancer or any harsh diagnosis and their families. These volunteer networks work across the country for families in a strained financial situation.

Some patients may also be eligible for grants to help offset some of these costs. CancerCare is one such organization that provides financial assistance for travel and other needs for cancer patients in the United States and Puerto Rico.

Just like with the hospitality housing, these organizations and grants also typically have their own eligibility criteria. Patients should be sure to research their options to determine what they might qualify for and what will best fit their needs.

A cancer diagnosis comes with a lot of uncertainties, including how to manage the constantly growing bills. Fortunately, there are various organizations working to help these families stay together throughout a loved one’s cancer journey regardless of their financial situation.

A First Look into the EPA’s Risk Evaluation of Asbestos Emily Walsh Tue, 27 Jun 2017 04:00:00 GMT Last June, anti-asbestos advocates rejoiced upon the passing of the Frank R. Lautenberg Act that seemed to pave a clearer path to a future ban on the toxin. The celebration continued a few months later when the Environmental Protection Agency (EPA) listed the first ten chemicals they would investigate and asbestos was included. Asbestos Exposure Mesothelioma Mesothelioma Diagnosis Outreach & Awareness

Last June, anti-asbestos advocates rejoiced upon the passing of the Frank R. Lautenberg Act that seemed to pave a clearer path to a future ban on the toxin. The celebration continued a few months later when the Environmental Protection Agency (EPA) listed the first ten chemicals they would investigate and asbestos was included.

Six months after that exciting announcement, the EPA has given the public a glimpse into their investigations by releasing their scope documents of the risk evaluations for all ten chemicals. The documents include an initial look at the conditions of use and hazards these chemicals pose, and an analysis plan for how the EPA will further assess exposures and risks.

Though the first look is just the very beginning of the years-long investigations ahead, the document provided some insight into asbestos use today and provides hope that the next steps will lead to an eventual ban on the toxin.

Asbestos Use in the United States

Many people think of the dangers of asbestos in terms of its old uses. It was so widely used in construction that it remains in older homes and buildings, and even some older consumer products. These legacy uses and their disposal were not considered for the EPA’s evaluation because they believe the assessments should be focused on current or reasonably foreseen uses of the chemicals. The agency also noted they excluded instances of the asbestos-contaminated vermiculite from Libby, Montana, because the mine is no longer being used.

Chrysotile has been the most predominantly used type of asbestos in the United States, and remains to be today. Though asbestos hasn’t been mined in the United States since 2002, it’s still imported in large quantities each year. According to the document, 340 metric tons (749,572 pounds) of raw asbestos was imported, primarily from Brazil, in 2016 alone.

The report also notes that all of the asbestos imported is currently used in the chlor-alkali industry. Industry representatives informed the EPA that today three companies operate 15 of these plants that use the raw asbestos in production of semi-permeable diaphragms. The document notes the agency’s plans to further evaluate the processes at these plants. It’s estimated that a typical plant uses anywhere from 5 – 25 tons of asbestos each year.

In addition to the known use of asbestos in these diaphragms, the EPA also included a known use of asbestos in sheet gaskets throughout the chemical industry. The EPA will also investigate products that show “evidence of use” as noted in other safety data sheets and sources. These products include:

  • Industrial friction products
  • Vehicle friction products
  • Aftermarket brakes
  • Adhesives and sealants
  • Roof coatings
  • Other gaskets and packaging materials

The EPA also notes plans to investigate suspected asbestos-containing products that the United States Geological Survey (USGS) has indicated as being imported to the United States. These products of “reasonably foreseen use” include building products and textiles.

Handling of Asbestos

Removing and disposing of asbestos properly is essential in avoiding potential exposure. But if the asbestos is already damaged, or friable, extra precaution in its handling is required. Facilities must report releases or other waste management of only friable asbestos to the Toxics Release Inventory (TRI) program.

In 2015, the TRI program recorded approximately 25.6 million pounds of friable asbestos waste managed by 36 facilities. 875 pounds of this asbestos waste were recycled, approximately 188,000 pounds were treated, and the remaining 25.4 million pounds were released into the environment. The vast majority of the asbestos was disposed of in landfills, while 314 pounds of the waste was released to the air via stack and fugitive air emissions.

The amount of on and off-site friable asbestos disposal has increased significantly over the course of a few years. In 2009, only 8.8 million pounds of asbestos waste was recorded. By 2012, this amount nearly doubled to over 16 million pounds of asbestos waste managed. Again, by 2015 the amount of waste again increased to over 25 million pounds of asbestos disposed of.

The TRI program noted most of these releases stem from the hazardous waste industry, petroleum industry, and the chemical and electric sectors.

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Risk of Asbestos Exposure

In addition to these industries handling and using asbestos, the EPA noted how asbestos may impact the public. The document states that asbestos levels in the air can vary from a number of factors, but in general cities have ten times as much asbestos concentration as rural areas. The EPA broke down their asbestos exposure risk into three categories: occupational, consumer, and general population. The agency noted inhalation of asbestos is the largest threat no matter the category. Occupational exposure can occur to those directly working with asbestos and what the agency describes as “non-users,” workers who are more bystanders and unknowingly interact with the mineral through activities like loading products or maintaining equipment.

The document states the general population can be exposed to asbestos through drinking water or wastewater, as well as solid wastes of air emissions. Naturally occurring asbestos can become airborne or contaminate drinking water or soil, making consumers more at risk of exposure. Those who live near manufacturing, processing, and disposal sites are also at a higher risk for exposure.

The agency also noted that cases of malignant mesothelioma are on the rise, especially among those 85 years old and above. The report states cases are also decreasing in those aged 35 – 64, but believes there is ongoing asbestos exposure among those under 55 years old. The EPA will continue to examine these hazards to human health, as well as its effect on the environment like aquatic life.

Next Steps

The EPA still has a lot of work ahead in its investigation of these ten chemicals. Now that they’ve released their scope documents, the next step will be hazard and exposure assessments to determine the toxicity and health issues the chemicals pose, as well as the intensity and frequency of exposures under the conditions of use.

After these assessments, the EPA will then make a risk characterization, essentially analyzing all of their findings, and a risk determination. In their risk determination, the agency will decide if the chemical as it is used today poses an unreasonable risk to public and environmental health. If so, they must determine a plan to mitigate the risk within two years.

Under the new administration, however, the future of the EPA is rather uncertain. President Trump originally proposed budget cuts of about 31%, which would bring the agency to its lowest operating budget in decades and eliminate many important programs.

All of us can help show our support for this important work to continue by reaching out to your local representatives. The work being done under the Lautenberg Act is the closest the United States has been to a potential asbestos ban in decades. If the EPA budget is gutted like Trump has proposed, who knows how much longer we’d have to wait.

Remembering Mesothelioma Victims in the UK MCA Warrior Stories Wed, 21 Jun 2017 04:00:00 GMT Even though the United Kingdom officially banned asbestos in 1999, the toxin continues to claim lives. Though no new uses or imports of the mineral are allowed, it still remains in many schools and older buildings causing many to unknowingly be exposed. Since there is a long latency period after exposure before symptoms appear, millions are still at risk to develop mesothelioma and other asbestos-caused diseases in their lifetime. Asbestos Exposure Mesothelioma Mesothelioma Diagnosis Outreach & Awareness

Even though the United Kingdom officially banned asbestos in 1999, the toxin continues to claim lives. Though no new uses or imports of the mineral are allowed, it still remains in many schools and older buildings causing many to unknowingly be exposed. Since there is a long latency period after exposure before symptoms appear, millions are still at risk to develop mesothelioma and other asbestos-caused diseases in their lifetime.

In 2014, there were 2,717 new cases of mesothelioma in the UK. This number is on par with the number of new cases each year in the United States, where asbestos is still not banned. While it is a rare disease and the number of cases may not appear alarmingly high, the incidence rate in the UK has increased by 71% since the 1990s. Mesothelioma is preventable, and there’s still a lot more work to be done worldwide to save lives from asbestos.

Over the years, the UK has said goodbye to several well-known talents because of this rare disease. For many of them, it’s uncertain how they were exposed to the toxin, which shows the continued importance of raising awareness for this mineral and the dangerous diseases it can cause.

George Hunt (February 27, 1922 – 1987)

George Hunt was a footballer from Swindon. At the young age of 14, he dropped out of school and began working at the Great Western Railway Works, also known as Swindon Works. After serving in the Army during World War II, Hunt had the opportunity to play football professionally and joined the Swindon Town Club. He made his debut in 1947 and played over 300 games before retiring in 1958. Hunt returned to Swindon Works fulltime and coached soccer occasionally on the side.

Unfortunately, his time at Swindon Works led to his devastating diagnosis. Railroad workers were frequently exposed to asbestos, as the mineral was used widely throughout the train because of its heat resistance. Over such a long career at the railroad, Hunt faced prolonged exposure to the toxin, which greatly increased his chances of developing mesothelioma.

So many workers at Swindon Works were exposed and ultimately diagnosed with mesothelioma that they sometimes referred to this rare cancer as “Swindon’s disease.” Hunt was diagnosed with peritoneal mesothelioma and passed away in 1987.

Dame Ann Ebsworth (May 19, 1937 – April 4, 2002)

Dame Ann Ebsworth was a barrister and judge of the High Court. She was appointed to the High Court in 1992, becoming the first woman to ever be appointed to the queen’s bench division. At the time, she was only one of four women among the over 100 justices at the High Court. Ebsworth’s first priority was justice, and her colleagues lauded her for her fairness. She aimed high throughout her career and earned appointments in many courts of law.

Unfortunately, her successful career in the courtroom ended in early retirement shortly after she was diagnosed with peritoneal mesothelioma in 2000. Despite growing weaker, she continued to teach students who needed help and advocate the importance of justice.

Ebsworth was likely exposed to asbestos throughout her childhood, as she grew up in a military family. Her father served as an officer in the Royal Marines, and the family frequently traveled to different barracks. Asbestos was frequently used throughout the military, on various vessels and in buildings on base. Veterans make up a large proportion of mesothelioma diagnoses, and Ebsworth likely had secondhand asbestos exposure from her father’s various interactions with the mineral.

Michael Coney (September 28, 1932 – November 4, 2005)

Science fiction writer Michael Coney had his first story published in 1969 in a science fiction magazine, with several other short stories published in British and American publications shortly after. Throughout the 1970s, Coney established himself as one of the leading British science fiction writers, which many of his critics owe to his move to the West Indies for a fresh start.

Though critics claim his period of intense creativity ended when his family moved to Canada, his novels and short stories were still loved by his audience and critics alike. Some of his most beloved work include his novels Mirror Image and Glass Children.

It remains unclear how Coney was first exposed to asbestos which later led to a pleural mesothelioma diagnosis. In his last interview, Coney described how debilitating the disease was and how he struggled with his concentration. He said handling the disease took over his ability to write. When he was diagnosed, Coney decided to release his latest short stories for free online. His last novel, I Remember Pallahaxi, was published posthumously in 2007.

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Christie Hennessy (November 19, 1945 – December 11, 2007)

Christie Hennessy was an Irish folk singer and songwriter, though he suffered from severe dyslexia which made him unable to read or write. His most famous song, “Don’t Forget Your Shovel,” has often been described as an alternative national anthem for Ireland.

Hennessy realized his exposure to the toxin occurred as a result of his work in London as a painter and decorator. He worked with this company from the young age of 15, and likely faced prolonged exposure from the different buildings and jobsites he worked in.

He was later diagnosed with pleural mesothelioma, and sadly died at a London hospice at just 62. At the time, Hennessy had been working on new music and planning a tour. His wife, Gill Ross, recognized their legal rights and decided to pursue action against his employer for their negligence which ultimately led to the singer’s death. With the help of qualified mesothelioma lawyers, they were able to reach a settlement to assist with the high medical costs associated with the disease.

John MacDougall (December 8, 1947 – August 13, 2008)

John MacDougall was a Member of Parliament from 2005 until his death for Glenrothes. He previously served in the House of Commons for Central Fife after the 2001 election. Before he began his career in politics, MacDougall worked in shipyards. He first started caulking riveters and eventually transitioned to work at an oil rig as a boilermaker.

His asbestos exposure certainly occurred during his career before he transitioned to politics. Boilermakers were frequently exposed to airborne asbestos because of the nature of their work, especially when repairing older boilers that likely had damaged asbestos insulation.

MacDougall was diagnosed with malignant pleural mesothelioma in 2007. In later years, he revealed the severity of his disease, explaining he had his lung removed in the hopes of removing the cancer. In later interviews, his daughter Julie explained his decline was rapid, but he never gave up hope. After his passing, Julie created the John MacDougall Mesothelioma Trust in his honor in 2010. Their goals are to raise awareness for this rare disease and help support important mesothelioma research to hopefully one day find a cure.

Ian Cundy (April 23, 1945 – May 7, 2009)

Ian Cundy served as the Bishop of Peterborough from 1996 until his death. He was held in high regard for his education and varied skills. Throughout his career, Cundy strived to create better unity in the church. He is particularly known for his support of female priests, which created some tension with other church members.

He was diagnosed with pleural mesothelioma in 2007, and by 2008 announced his plans to retire early because of the severity of his disease. Although he underwent chemotherapy, the aggressive cancer rapidly spread. Ian passed away shortly after collapsing at a family event. His wife, Jo, released a book in 2014 about their life together and her journey in letting him go.

Though asbestos is banned in the UK, there is still a lot of work to be done to help change the statistics and better prevent mesothelioma.

The Challenges of Research in Immunotherapy Jackie Clark Fri, 16 Jun 2017 04:00:00 GMT Cancer research has made great advancements in recent years with emerging treatments like immunotherapy. Harnessing the immune system in different ways to better combat cancer has proven effective for a variety of cancer types, including mesothelioma. But there is still a lot of work ahead to truly understand how the treatment can be most effective. Mesothelioma Mesothelioma Diagnosis Mesothelioma Treatment

Cancer research has made great advancements in recent years with emerging treatments like immunotherapy. Harnessing the immune system in different ways to better combat cancer has proven effective for a variety of cancer types, including mesothelioma. But there is still a lot of work ahead to truly understand how the treatment can be most effective.

While this progress with immunotherapy has given patients a lot of hope, it hasn’t been an easy road and there are still many obstacles to face before the treatment reaches its full potential. Researchers have already faced many barriers with clinical trials and the cost of this treatment, and there will likely only be more challenges ahead.

In observance of Cancer Immunotherapy Month, we spoke with medical professionals working in different specialties to get their take on immunotherapy. In the first article of this series, we asked them about the potential for immunotherapy and recent exciting developments. In this article, we learned what barriers they’ve come up against and potential future obstacles for the emerging treatment.

Availability of Immunotherapy

In many cases, patients can only receive immunotherapies through clinical trials because the treatment is still so new. Researching a new drug or type of treatment takes years, and the process goes through different phases of testing. It can be a delicate balance of finding the right clinical trial at the right time during its different phases of research.

There are thousands of clinical trials going on at any given time, and it can be difficult to understand all the nuances of choosing and joining a clinical trial. It’s understandably an overwhelming decision to choose a clinical trial to pursue from a list of possibly hundreds a patient may be eligible for. Even with advice from an oncologist and lots of research, patients may be taking a gamble on choosing one promising clinical trial over another.

Research shows, however, that many patients don’t even consider such a decision. The majority of cancer patients choose not to participate in a clinical trial and stick with standard treatment methods instead.

“There are so many clinical trials that need to be done to get us to the next steps. Clinical trials are, for the most part, the best therapy available to patients,” explained Dr. Ezra Cohen, the director of translational science at UC San Diego. “The sobering reality is that only 3% of adult cancer patients participate in clinical trials. We need to urgently break down barriers to participation and encourage patients to seek out clinical trials.”

For those that do choose to participate, there are no guarantees. Different phases of clinical trials take on varying numbers of participants, which ultimately puts some patients on a waiting list to see if they can have their chance at a promising new treatment. And even if the patients are able to join and begin the trial, there are never any guarantees the treatment will work for them or what kind of side effects they may experience.

But despite the risks involved, researchers hope patients take the time to learn about clinical trials they may be eligible for and take a leap of faith. “I encourage all eligible patients to consider clinical trials, especially when immunotherapy agents are involved, because it is through these trials that we develop the science and improve patient outcomes,” insisted Dr. Bradley Corr, assistant professor in gynecologic oncology at the University of Colorado.


Cost of Immunotherapy Drugs

“The research is still expensive but I believe more critical now than ever. We are at a time when the technology, biology, and drug development have come together in a way that will change the field forever. We must take advantage of that,” said Dr. Cohen.

Cancer treatment costs in general have grown exponentially over the years with no sign of lowering any time soon. The cost of making a cancer drug and going through these trials can be well over a billion dollars, and unfortunately leads to patients also taking on a high expense to receive the treatment.

Keytruda® (pembrolizumab) for instance has shown promise for mesothelioma and other cancers, but the cost of the drug can be well beyond many patients’ means. Recent estimates say Keytruda costs about $13,000 every month, which would add up to $156,000 for one year of treatment.

“Once you get to the third, fourth or ninth treatment, you have incurred a lot of treatment cost, and if you don’t have coverage what do you do?” said Dr. Satish Shah, an oncologist and hematologist at Gettysburg Cancer Center. “How can you not have treatment that is potentially life saving? [But] if one treatment is $10,000, how can you justify that treatment?”

Since these drugs are often part of clinical trials, much of these costs will be covered by the sponsor of the study. However, that doesn’t mean the participants won’t have any costs of their own. Any additional testing or procedures required as a result of the trial often aren’t covered by insurance, though in some cases the sponsor will also cover these additional expenses.

But even with coverage, health insurance is often not enough when dealing with cancer, and it’s estimated patients on average pay at least 20 – 30% of cancer drugs costs out of their own pockets. Many cancer treatments and clinical trials span well beyond a single calendar year, meaning patients often end up with a lifetime of debt to receive lifesaving treatment.

Whether participating in a clinical trial or turning to more conventional treatments, patients face a hefty price tag. Chemotherapy, for example, costs a few thousand dollars for a single treatment, so one round of chemo can reach upwards of $50,000.

Though there are some options to alleviate the financial burden of cancer treatment, the price of these drugs can often cause patients to avoid the potential benefits of a more costly emerging treatment.

Understanding the Side Effects

Since immunotherapies are still in the early developmental stages, researchers still have a lot to learn. As with any developing treatment, there are still many unknowns and more questions will likely continue to emerge as research continues.

“I think the biggest barrier presently is our need to understand the immune system further and execute the experiments that move the field forward,” said Dr. Cohen.

The immune system is extremely complex, and will take time for researchers to fully understand how it reacts with these new treatments, as well as how cancer reacts with our immune system. One main focus of research currently is determining why immunotherapy has worked so well in certain types of cancers, but not in others, which researchers believe is because of the immune environment. Researchers also question the side effects patients may encounter.

“This particular type of treatment is very different so one challenge would be familiarity with the administration of these drugs to understanding the side effects and appropriately because some of these side effects could be permanent damage,” Dr. Shah explained. “So you have to be knowing as a health care provider, and you as a patient, what changes have occurred and be careful what you report to your doctor so your doctor is aware of what to look for.”

Immunotherapies have been found to cause a wide range of side effects, such as skin reactions or flu-like symptoms. In general, researchers have said these therapies are pretty well tolerated, but there are a lot of unknowns in terms of how immunotherapy might affect the body over a long period of time or years after treatment.

Regardless of the obstacles and risks, immunotherapy is an exciting new treatment that has the potential to change cancer care for good. With continued research and support, it will likely only become more effective for more cancers, and maybe even help lead to a cure.