Identifying and Avoiding False Health Claims

Internet scams are widespread and can infiltrate every aspect of our digital presence. The prevalence of online dating scams, for instance, was recently highlighted in the trending Netflix documentary “The Tinder Swindler.”

Scams have become particularly rampant in rare disease communities, and are spreading rapidly via social media platforms, web pages, and unsolicited text messages. You may have seen messages or comments such as:

“Dr. So-and-So cured me with his special blend of herbs. You can be cured also. Call Dr. So-and-So at his WhatsApp number …”

“Travel to Dr. J. K. Lol’s clinic in Mexico for a stem cell treatment. 100% satisfaction guaranteed. If you are not cured, there is a money-back guarantee.”

If so, I hope you recognized them as false promises.

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Preying on hope

Some will call it spam, but that is an insult to the processed meat product. You will find these promises in Facebook groups, Google search results, Instagram posts — anywhere a person can post publicly without providing proof of who they are or where they’re located.

Many rare diseases communities have formed Facebook groups to make connections and share information and tips. These false claims often appear as comments posted by a seemingly legitimate group member, offering hope for a cure and a contact method.

Too good to be true

If it sounds too good to be true, it’s probably a scam. Before you click the link or pick up your phone to call the number provided, look closely.

Does the claim make sense? Is it difficult to read due to poor spelling and grammar or a strange font?

Is the contact number a WhatsApp number? The first few numbers following the “+” indicate a country code. Does the country code align with the information on the person’s profile?

Examine the picture in the profile. Is it too perfect? Do a reverse search of the image by dragging and dropping it into Google’s image search feature. You may find it is a stock photo widely available on the internet.

Fact-checking

It’s critical to fact-check using a reliable, known source. Ask your care team about the product. My care team includes a pharmacist who is aware of all the medications I take, and understands how they might interact with a particular supplement or substance.

Check with credible advocacy organizations to see if they have any information about the treatment being offered. For instance, I’ve seen many claims that stem cell therapy can cure idiopathic pulmonary fibrosis, but this isn’t true. While stem cell research may be promising, the Pulmonary Fibrosis Foundation (PFF) has issued a statement cautioning patients against unregulated stem cell therapies that haven’t been properly tested. The PFF Medical Advisory Board notes that there are “unproven interventions offered by practitioners operating with minimal oversight at for-profit stem cell centers that represent ‘the modern day equivalent of snake oil.'”

You can identify legitimate clinical trials and approved treatments via reputable sources, including Pulmonary Fibrosis News, PFF, and the National Institutes of Health.

Your role

You can help by reporting scams on the website or app where they appear. Most social media platforms make it easy to report content. Site administrators will then review and possibly remove it.

Do not click on links in these types of posts. Simply opening the link can expose your personal data.

The value of simply scrolling past the scam is underrated. Engaging with posts that promise a cure or a treatment rarely leads to a productive conversation. Plus, many of these posts are generated by bots rather than people.

If you paid for a treatment or a cure and realized it was a scam, report it to your local law enforcement agency.

Stronger together

Scams targeting the rare disease community have become far too common, but we can watch out for one another. When someone asks about a specific claim, you can help them determine if it’s a scam. Refer them to this column as a starting point, or ask a question in the Pulmonary Fibrosis News Forums. Together, we can make every breath count.

Note: Pulmonary Fibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Fibrosis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.