Imposters, information theft, and internet scams: the dangers of unregulated online pharmacies – National Consumers League

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By NCL Food Policy and LifeSmarts Caleigh Bartash

With technology improving rapidly over the past few decades, online retailers have proved more convenient, reducing the market share of brick-and-mortar retailers. However, the convenience of purchasing prescription medication online or over the phone can inadvertently trap consumers in internet scams.Countless issues can arise from ordering prescription medication online. Unapproved internet dealers often evade government recognition or detection, failing to comply with drug safety regulations. Consumers can receive counterfeit, contaminated, or expired drugs. In some cases, these drugs may contain deadly opioids like fentanyl. Unauthorized medications can also have varying amounts of a medicine’s active ingredient — if they contain the correct ingredient at all.

Consumers may be attempting to access medications that they have previously been prescribed. However, they face security threats as soon as they give their personal details to an illegitimate pharmacy. These sellers have poor security protections, with leaks of sensitive customer information all too common. Illegitimate online sellers may even outright sell consumer data to scammers. Moreover, these websites can trick unsuspecting consumers into downloading viruses which further risk personal property and information.

Counterfeit drugs, unauthorized data sharing, and cyber attacks are dangerous, but now, a new threat has emerged involving counterfeit letters from the U.S. Food and Drug Administration.

Last week, the FDA released a press announcement alerting consumers to fraudulent warning letters claiming to be sent from the government. They advised that any consumer who received a warning message is likely the victim of a scam.

The July 2018 FDA press announcement is unique in that it is targeted directly to consumers. Commonly, these warning letters are used as a tool to inform the public about drug safety issues and are typically sent exclusively to manufacturers and companies creating products under their jurisdiction. FDA commissioner Dr. Scott Gottlieb summarized the FDA’s policy, stating “we generally don’t take action against individuals for purchasing a medicine online, though we regularly take action against the owners and operators of illegal websites.”

What’s next for those that received a warning letter? The FDA requests that potential victims contact them with information, including pictures and scanned documents if possible, in an effort to help them investigate the scams. Consumers can use the email address FDAInternetPharmacyTaskForce-CDER@fda.hhs.gov as the primary channel for communicating with the agency about suspicious warnings.

The best way to avoid falling victim to any scam involving illegal internet pharmacies is to abstain from suspicious websites. How do you distinguish fake internet pharmacies from safe ones? The FDA offers guidance with their BeSafeRx campaign. Asking a few simple questions at the doctor’s office or calling a certified pharmacist can help consumers protect themselves. Safe online pharmacies usually offer information including address, contact information, and state license. Consumers should be wary if the pharmacy does not require prescriptions to access pharmaceutical drugs. Other warning signs include international addresses, clear spam messages, and unreasonably low prices.

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Have more questions about fraud? NCL’s Fraud.org site has prevention tips, an outlet for consumer complaints, and an experienced fraud counselor to teach you how to avoid common scams. And for those wanting to learn more about proper medication consumption, our Script Your Future initiative has helpful advice and information so you can navigate your prescriptions with the utmost confidence.

Endometriosis: In need of attention! – National Consumers League

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Zoe PharoZoe Pharo is a rising sophomore at Carleton College in Northfield, MN and is excited to be a health policy intern with the National Consumers League this summer.

Endometriosis is estimated to affect close to 200 million women worldwide, but we often hear very little about its prevalence.

 

On behalf of the National Consumers League, I attended a June 19 panel on endometriosis, hosted by the Society for Women’s Health Research. Panelists included Linda G. Griffiths, PhD, Professor of Biological and Mechanical Engineering at the Massachusetts Institute of Technology; Stacey Missmer, ScD, Scientific Director of the Boston Center for Endometriosis; and Robert N. Taylor, MD, PhD, Professor of Obstetrics and Gynecology at the University of Utah. The panel was moderated by the Society for Women’s Health Research’s President and CEO, Amy Miller, PhD.

What is endometriosis? 

Endometriosis is a condition where tissue that is typically only located inside the uterus is found elsewhere in the body. While it is estimated that close to 200 million women worldwide will experience endometriosis, we often hear little about its prevalence. Even as awareness of endometriosis increases—thanks to Lena Dunham and other celebrities sharing their struggles with the disease—numerous challenges still remain, including the following:

  • Many women face delays in diagnosis or misdiagnosis;
  • Funding for research has been slashed and continues to decrease under the Trump Administration;
  • Subtypes of the disease have yet to be identified;
  • Data on the prevalence of endometriosis does not exist; and
  • There is no standardized way to measure the amount of pain felt by women with endometriosis, often resulting in upsetting and discouraging interactions when women try to talk to their clinician, family members, colleagues, spouse, or others about their experiences.

What are the symptoms of endometriosis? 

Common symptoms of endometriosis include infertility, back and pelvic pain, digestive problems, painful sex, and painful menstrual cramps. The most visible symptoms of endometriosis are the lesions that often accompany the disease. However, there is no conclusive research on the relationship between lesions and pain or infertility. It is important to note that many women with endometriosis never present with any outwardly visible symptoms. Further, medical professionals do not have a standard way to measure pain. As Dr. Robert N. Taylor said, “Pain is a highly complex behavior” and is therefore hard to study and model.

Additionally, a patient diagnosed with endometriosis may present with comorbidities. Endometriosis has been found to lead to an increased risk of cancer, cardiovascular disease, and other autoimmune diseases.

Why the delay in diagnosis?

Diagnosis of endometriosis is delayed an average of six to seven years, partly because, as Dr. Taylor said, “American medicine has lagged behind in the teaching of sexuality.” Healthcare providers and women’s health advocates need to create spaces where women are comfortable discussing their sexual health and any painful symptoms that may point towards a diagnosis of endometriosis.

Even when women do discuss their symptoms, delayed diagnosis can be due to symptoms that overlap with other gynecologic and gastroenterological processes. For example, a common misdiagnosis is IBS. In addition, for many years, the only way to definitively diagnose endometriosis was by operating, using laparoscopy or excision. Surgical diagnoses come with risks, so we are beginning to move towards alternative methods that do not rely on such invasive procedures. However, even newer medical treatments, such as suppressing hormone production, can have negative consequences in young women.   

What can policymakers, healthcare providers, and advocates do?

Policymakers can appropriate additional funding for endometriosis research. First and foremost, endometriosis is an economic problem, representing an annual $69.4 billion economic burden in the United States. Despite this burden, funding for endometriosis is shrinking, at the same time that endometriosis is becoming more prevalent in the population.  

As Dr. Linda Griffiths pointed out, research on endometriosis is not what is funding many scientists’ careers. Dr. Griffiths described her research on endometriosis as a “hobby,” and advocated for more basic research on the biology of endometriosis and on potential subtypes of the disease. Future research should also look at selective groups that have yet to be studied. In addition, it is important to reconsider how to effectively judge pain. Currently there is no standard algorithm. This is troubling to Dr. Griffiths, as she recounted a time when she vomited from the intensity of her own endometriosis pain.  

Dr. Griffiths also recommended routine and accurate collection of data, which currently does not exist for endometriosis. We need to consistently measure the prevalence of endometriosis in various populations as well as the efficacy of potential treatments.  

Dr. Stacey Missmer recommended the implementation of policies to enable women to report their symptoms and be taken seriously when they do so. Electronic medical records might provide a way to alter clinician-patient interactions. Dr. Missmer said she envisions an electronic drop-down option for immediate entry, perhaps asking patients, “Are you experiencing pelvic pain?”

Finally, we need to talk openly about the physical and psychological effects of endometriosis. NCL is working closely with leading organizations in the women’s health space to consider the most effective ways to bring down barriers to better outcomes in women’s reproductive health.

Vaccine-averse ‘Hotspots’: A danger to all – National Consumers League

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By Melissa Cuddington, NCL public policy intern

Think that measles has been eradicated from the United States? Think again. According to a report published earlier this month by PLOS Medicine, measles is still spread by unvaccinated children and foreign visitors to the United States. This spread is seen in “hotspots,” otherwise known as areas where the risk of disease is higher because parents choose to abstain from getting their children vaccinated. Parents continue to claim non-medical exemptions for issues of philosophy, and that’s dangerous.

A recent Washington Post article shined a light on the growing problem the anti-vaccination movement is creating: 18 states still allow parents to opt their children out of school immunization requirements. These hotspots are located across the country both in urban, metropolitan locations, such as Houston, Austin, and Pittsburgh and in rural areas as well.

In many of these urban centers, too many children are being exempted from immunization requirements, making it easier for vaccine-preventable diseases to spread and infect others. The Post article notes that these urban centers have busy airports, opening up the possibility for diseases to spread to the un-vaccinated.

According to a study conducted by the Centers for Disease Control and Prevention (CDC), people who remain unvaccinated are most likely the cause of the increased occurrence of measles and other contagious diseases being spread throughout the United States. The CDC also predicts the reemergence of these diseases if parents continue to skirt vaccination requirements.

Many of these diseases from the past are easily preventable if parents get their children vaccinated at a young age. Medical research shows that if children do not receive the measles vaccination (MMR) 12 to 15 months after birth, they are at risk of exposure.

Sadly the anti-vaccination movement in the United States has been going strong. At some point, parents need to consider that the decision not to get their child vaccinated is not just personal—it’s a communal one. The choice to abstain from vaccination puts vulnerable adults and children at risk. As the research demonstrates, this decision could expose others to possibly fatal diseases, which are entirely preventable with immunization.

As a consumer advocacy organization that champions vaccinations for all who can safely be vaccinated, NCL pushes against these non-medical exemptions. It is dangerous for parents to be making decisions for their children that can have adverse effects on others. NCL encourages state and federal health officials to support laws that don’t allow personal preference to prevent children from being immunized. California’s law is a good model and would keep us all safe from totally preventable diseases.