Mesothelioma Survivor Lou Williams Steps Up Her Drug Advocacy Efforts

Lou Williams wants to make the drug that has helped her survive mesothelioma affordable for her fellow Australians struggling with the asbestos cancer.

Lou lost her father to mesothelioma in 1985 and she has battled the disease herself for nearly 13 years. With the help of a new drug, Keytruda, Lou’s tumors have begun shrinking and she has a new lease on life.

“Keytruda has given me back my life, as my body was literally shutting down,” Lou told MesotheliomaHelp via email.

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“I am now once again living my life with quality, strength and determination.”

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As her strength returns, so does her resolve to fight for other mesothelioma victims. She is now focused on making Keytruda available to Aussies at a reasonable cost.

On Sept. 3 Lou will have her eighth dose of Keytruda, an immunotherapy drug from Merck approved in the U.S. and Australia for melanoma, but not yet approved in either country for mesothelioma. For Australians, that means a mesothelioma patient must pay thousands of dollars per dose, administered every three weeks—a deal breaker for many.

Lou Working With Australia’s Pharmaceutical Benefits Scheme

Keytruda is being touted as one of the biggest breakthroughs in mesothelioma treatment. In the simplest of explanations, Keytruda enhances the body’s immune response to cancer, allowing natural defense mechanisms to kick in and fight mesothelioma tumors. A recent U.S. clinical trial found Keytruda to be effective in controlling mesothelioma tumors in three-fourths of patients, leading researchers to say the results are “encouraging.”

After having exhausted all of her treatment options earlier this year and being at death’s door, Lou has, with regular Keytruda doses, rebounded beyond what she and others thought was possible. She said in an August 20 Examiner article that her palliative care nurse, husband and oncologist all say her recovery has been “miraculous.”

It has also been expensive. Lou acknowledged in a recent blog post that having quality of life back is priceless, but “Our credit card is taking a battering.”

To make Keytruda more accessible for other mesothelioma sufferers, Lou’s goal is to get the drug added to the Pharmaceutical Benefits Scheme (PBS). This would allow Australian oncologists to offer the treatment to mesothelioma patients free of charge or for a negligible amount.

The PBS is a government run service available to all Australian residents who hold a current Medicare card. Through the PBS, the Australian government subsidizes the cost of medicine for most medical conditions.

“We need to have Keytruda in the PBS list alongside melanoma so others diagnosed with mesothelioma can have another treatment option to discuss with their oncologist,” Lou said.

Lou and her husband met with their local Federal Member of Parliament in late July to get the PBS to accept Keytruda on the mesothelioma treatment list. She reported in her August 4 post that her local Member Parliament’s office told her that they have made initial contact with the drug company and are anticipating discussions later this month, a development Lou described as “very promising”.

Lou is passionate about seeing asbestos banned globally. Her work with the Asbestos Diseases Foundation of Australia, Asbestos Disease Awareness Organization of the U.S., and countless other organizations, as well as her non-stop media tour to get the word out about the dangers of asbestos, has impacted people worldwide.

But for Lou, it still is not enough.

“It would mean the world to me knowing that those diagnosed with mesothelioma can have freedom and peace of mind choice without the worry of cost to consider,” said Lou.

Follow Lou’s mesothelioma and advocacy battle on her blog at “Asbestos – Living with Mesothelioma in Australia – Louise (Lou) Williams.”

You can contact Lou at [email protected].

Photo Credit: The Examiner

Sources:

Pharmaceutical Benefits Scheme
http://www.pbs.gov.au/info/about-the-pbs#What_are_the_current_patient_fees_and_charges

Study Shows That Asbestos Risks Remain Decades After Industry Departs

An Italian study published back in May found that malignant mesothelioma cases tend to be concentrated around industrial facilities that use asbestos. A new Italian study finds that mesothelioma incidence near industrial areas remains high long after an asbestos-using industry ceases operations.

Asbestos is the only known cause of mesothelioma, an incurable cancer affecting the membranous lining of the lungs and abdomen. Most cases of mesothelioma are related to occupational asbestos exposure. Cement factories, shipyards, automotive plants, food processing facilities, power plants, and steel plants are among the major sources of occupational asbestos exposure.

Not all asbestos exposure, however, is directly attributable to a person’s work activities. People can also be environmentally exposed to asbestos in areas where asbestos industries operate.

One such area is Casale Monferrato in Northwest Italy, the former home of the Eternit asbestos-cement plant, which closed in 1986. An Italian court in 2012 convicted the plant’s owners of causing the asbestos-related deaths of more than 3,000 people. While many of those people worked at the Eternit plant, others merely lived near the plant.

Casale Montferro is the subject of a study published recently in Occupational & Environmental Medicine. The study authors identified 200 cases of pleural mesothelioma diagnosed in Casale Montferro residents between 2001 and 2006 in an effort to quantify the association between pleural mesothelioma and asbestos exposure.

They discovered that the odds ratio (OR, a measure of association between an exposure and an outcome) of an asbestos-exposed individual developing mesothelioma ranged from 4.4 to 62.1, with increased exposure over time resulting in a higher OR. Subjects never occupationally exposed to asbestos had a mesothelioma OR of 3.8 to 23.3, while an OR of around 2 was observed for people living in homes near buildings with large asbestos cement parts.

The findings draw attention to the fact that asbestos health risks linger in the environment long after asbestos industries vacate. In addition, they serve as a reminder that asbestos disease can occur in people who never directly handled asbestos on the job.

“Risk of [pleural malignant mesothelioma] increased with cumulative asbestos exposure and also in analyses limited to subjects non-occupationally exposed. Our results also provide indication of risk associated with common sources of environmental exposure and are highly relevant for the evaluation of residual risk after the cessation of asbestos industrial use,” write the study authors.

The Italian study has implications for America and other countries with a history of industrial asbestos use. U.S. asbestos use peaked in the mid-70s, but asbestos diseases, which have a latency period of 10-40 years or more, continue to kill an estimated 12,000-15,000 Americans.

Asbestos kills 12,000-15,000 people per year in the U.S

But the United States, unlike Italy, has not banned asbestos. While both countries deal with the residual presence of asbestos-containing materials from a bygone industrial era, the United States is unique among industrialized nation for its ongoing importation and use of asbestos.

Anyone interested in taking part in the fight against asbestos should visit the EWG Action Fund website.

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“Laboratory in a Patient” Could Allow Simultaneous Testing of Multiple Mesothelioma Drugs

Personalized cancer therapy allows doctors to target treatment to a patient’s unique mesothelioma characteristics. Oncologists can personalize and adjust care based on the efficacy of a treatment for the patient. However, determining the right treatment or how well a drug is working can take time, leaving the patient with precious little time if the drug is not effective at fighting off the deadly cancer.

Now, researchers at MIT, Beth Israel Medical Center and Fred Hutchinson Cancer Research Center and Presage Biosciences in Seattle have found a way to determine whether a patient’s tumor will be sensitive to a sampling of cancer drugs through an “implantable device” that can return nearly immediate results. The “laboratory in a patient” can contain samples of multiple drugs and simultaneously expose the tumors to all the drugs at once to assess the impact on the cancer, allowing the doctor to find the optimal drug for the patient.

In an April 22 article in MedlinePlus, researchers report two separate tools have been developed that can quickly detect whether a patient will respond to a treatment. With this approach, no biopsies are needed, several drugs are tested at once, and the patient is not exposed to side effects.

“Different patients can respond completely differently to the same drug,” said the lead author of one of the studies, Oliver Jonas, a post-doctoral associate in the Robert Langer Lab at the Massachusetts Institute of Technology’s Institute for Integrative Cancer Research. “So you have to test therapies sequentially. And it can take several weeks to many months to see the effect of a single therapy,” Jonas said.

“So the motivation of this whole study was to find ways to identify the optimal therapy in a patient before a treatment decision is actually made,” Jonas said.

Mesothelioma, often called asbestos cancer as the signature cancer of the mineral, is highly aggressive, with no known cure. Most often, the cancer resists the selected treatment, leaving the oncologist scrambling to find another option that may prove effective. Unfortunately, this gives the mesothelioma time to grow and divide, impacting the patient’s survival.

One device, that can hold 16 different cancer drugs, according to MedlinePlus, was tested on mice using melanoma, prostate and breast cancer tumors. The results showed “a reliable and accurate way to predict each drug’s effectiveness.” However, Jonas warned that the test comprised a mere millionth of a full dose, although he added, that the amount “correlated strongly” with the impact of a full dose used in treatment.

Personalized care targeted to a patient’s unique mesothelioma characteristics optimizes the potential for success of the treatment and offers treatment options that may not otherwise have been considered. The use of this device could allow oncologists to personalize treatment to each patient’s reaction to the therapies.

The second device, from the Seattle team, is a handheld microinjection device designed to test up to eight drug samples in tumors located near the surface of the skin, such as skin cancer, breast cancer, and lymphoma. Initial tests have been conducted in four humans with no serious side effects.

The researchers concluded, “Because these effects are crucial to predicting drug response, we envision that these devices will help identify optimal drug therapy before systemic treatment is initiated and could improve drug response prediction beyond the biomarkers and in vitro and ex vivo studies used today.”

Dr. Peter Kozuch, associate professor of medicine, hematology and medical oncology at Beth Israel Medical Center in New York City, adds that more research must be done, and they must see the same benefits and results in people as they have seen in the lab.

“The field of oncology is increasingly trying to become more precise,” said Dr. Kozuch. “But this is brand new technology, ” he cautions, “And unfortunately there is simply no shortcut to clinical development.”

Findings from both studies were published online April 22 in Science Translational Medicine (http://stm.sciencemag.org/content/7/284/284ra57).

See Mouse Models That Mimic Human Tumor Growth Could Lead to New Approach to Personalized Mesothelioma Care for a study where researchers tested parallel tumor progression in patients suffering from the disease in an animal laboratory mice.

Know more about Mesothelioma and how you can deal with it.

EWG Analysis: Asbestos Kills 12,000-15,000 Americans per Year

A new analysis by the Environmental Working Group (EWG) finds that asbestos kills significantly more Americans each year than previously estimated—and the actual asbestos death toll may be much higher.

Using data from the Centers for Disease Control and Prevention (CDC) database, EWG calculated that from 1993 to 2013, 189,000 to 221,000 people (12,000 to 15,000 per year) died from mesothelioma, lung cancer, and asbestosis in the United States.

EWG says that public records of U.S. asbestos-related deaths are imprecise, however, and that their estimate is conservative.

“As shocking as these figures are, they may be too low,” said epidemiologist and former assistant Surgeon General Dr. Richard Lemen in a press release from EWG Action Fund.

http://www.prweb.com/recentnews

“The report did not estimate deaths from the other-asbestos-related diseases. Furthermore, some studies suggest even higher lung cancer rates in asbestos-exposed workers,” said Lemen.

According to EWG, 39,870 American died from mesothelioma, an incurable cancer caused exclusively by asbestos exposure, from 1999 to 2013. Over the same period, EWG estimates that 20,317 Americans died from asbestosis, a type of lung scarring caused by asbestos fibers, while as many as 159,480 died from asbestos-related lung cancer.

In addition to deaths from these causes, it is believed that asbestos exposure can also cause cancers of the larynx, pharynx, stomach, colon, ovaries, and rectum. An older study by EWG that includes asbestos-related gastrointestinal cancer puts the number of annual U.S. asbestos deaths at around 10,000.

U.S. asbestos use peaked in the 1970s and the carcinogenic mineral fiber is no longer mined in this country, but it continues to be imported and used in a wide range of products. An EWG analysis of U.S. port records indicates that at least 8 million pounds of raw asbestos have arrived here since 2006.

EWG’s figures indicate that there was no apparent decline in asbestos deaths from 1999 to 2013. There were 2,481 mesothelioma deaths in 1999 compared to 2,686 in 2013 and a high of 2,874 in 2012. Asbestosis deaths were virtually identical in 1999 and 2013 (1,258 vs. 1,229). Both EWG’s lower and higher estimate of lung cancer deaths show increases from 1999 to 2013.

This can be attributed to the long latency period of many asbestos diseases. Mesothelioma, for example, can take 15-50 years or more to develop from the time of initial asbestos exposure.

Given the lag between asbestos exposure and disease onset, asbestos disease rates will likely remain high for years to come. One expert estimates that within the next three decades 300,000 Americans will die from asbestos.

“The only way to see the numbers of asbestos-related fatalities significantly decline among Americans is for our elected leaders to adopt an outright ban on the deadly substance,” said Sonya Lunder, author of the EWG report, “Asbestos kills 12,000-15,000 people per year in the U.S.”

Asbestos kills 12,000-15,000 people per year in the U.S

Italian Study: Mesothelioma Cases Concentrated Near Asbestos-Using Industries

Italian researchers looked at the geographic distribution of malignant mesothelioma cases and found that they tend to be clustered around cement manufacturing, shipbuilding, and other industrial facilities.

A team lead by Marisa Corfiata analyzed 15,322 incident cases of malignant mesothelioma from the period 1993 to 2008 recorded by the Italian national mesothelioma registry. Subjects were interviewed and asbestos exposure—the only known cause of mesothelioma—was defined for 11,852 of 15,322 cases. Cases were then then mapped and geographic clusters identified for the Northwest, Northeast, Centre, and South & Islands regions of Italy. Finally, case clusters were identified according to one of three asbestos exposure modalities: environmental, familial, and occupational.

According to the researchers, the main sources of mesotheliomas are cement manufacturing plants and shipyards, while several case clusters were also found in the vicinity of asbestos textile facilities.

“The largest [malignant mesothelioma] clusters, per number of cases or municipalities included were found, indeed, where the biggest asbestos cement plants or shipyard facilities were located,” writes Corfiata. “Overall, it should be noted that an asbestos cement industry, an asbestos textile industry or a harbor industrial area inclusive of shipyards partially contribute to exposure of MM cases in about 75% of the clusters identified.”

Diving deeper into the numbers, the researchers note that the high number of mesothelioma cases among women in the largest asbestos-cement industry clusters may be attributable to familial exposure, or so-called “take home” exposure, which occurs when one family member brings home asbestos fibers on their body or clothing and exposes other family members. For the shipyard clusters, mesothelioma is mainly associated with naval construction and/or repair activities.

The researchers also note a number of other industrial asbestos exposure sources, including steel manufacturing plants, metal product manufacturing, oil refineries, chemical facilities, power plants, railway carriage construction and maintenance, the automotive industry, glass industry, and food processing. These are many of the same industries that have historically in the United States produced occupational asbestos exposure.

But unlike the United States, Italy has enacted a national asbestos ban. The study points out that Italian asbestos consumption peaked later in Italy than in the U.S., and, given the 35-40 year latency period of mesothelioma, “a high number of cases is still expected in Italy in the next few decades.”

Mesothelioma incidence is thought to have already peaked in the United States, but as long as the use of asbestos products remains legal in this country, the carcinogenic mineral fiber continues to pose a threat to public health. Each year in the U.S. approximately 3,000 people are diagnosed with mesothelioma, while 10,000 total death are attributed to asbestos.

You can read the full text of the Italian report “Epidemiological patterns of asbestos exposure and spatial clusters of incident cases of malignant mesothelioma from the Italian national registry” at BMC Cancer.

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