National Volunteer Week

National Volunteer Week was established in 1974, and we at NeedyMeds want to recognize our amazing volunteers that help make our work possible.

 

Two of our volunteers, Max & Don

Two NeedyMeds volunteers, Max & Don

Our local volunteers are invaluable! They help us print and mail lists of medications for callers seeking help with several prescriptions (our call center helps with this information over the phone, but due to the volume of calls we receive we may mail you information for long lists of medications), update information in our databases, and help mail out the NeedyMeds Drug Discount Cards. Some of our earliest volunteers had been offered paid positions in the formative years of NeedyMeds, and our incoming volunteers are anyone from high school students seeking work experience to retired individuals looking for light office work. Our volunteers’ ages range from 16 years to 97 years old. All take their work seriously and help make NeedyMeds the success it is.

 

More recently, we have started our Volunteer Ambassador Program (VAP) that allows interested advocates around the United States to help spread the word in their communities about NeedyMeds’ resources. We have Volunteer Ambassadors all over the country—from Massachusetts to California; from Macon, Alabama to Homer, Alaska—who distribute NeedyMeds Drug Discount Cards, provide presentations of NeedyMeds resources for vulnerable populations and comprehensive trainings for organizations within their communities. Many are healthcare professionals or advocates, as well as students and members of other healthcare organizations. If you are interested in becoming a Volunteer Ambassador, contact us at outreach@needymeds.org.

 

We also have a board of directors comprised of volunteers with professional backgrounds in medicine, law, nonprofit management, and local government. Our board oversees the progress being made by NeedyMeds month-to-month as well as approving budgets, plans, and strategies.

 

National Volunteer Week is a time to celebrate the impact of volunteer service in our communities. With our network of volunteers, NeedyMeds is able to accomplish much more than we would as a small nonprofit. We applaud volunteers all over the country, and thank you all for your service.

Autism Awareness Month

April is Autism Awareness Month. Autism spectrum disorder (ASD) is a common but complex developmental disability, with 1 in 68 American children born somewhere on the autism spectrum. The signs of autism are usually apparent when a child is between 2 and 3 years old, although they may be seen in younger children. Symptoms are different for everyone, though some of the behaviors associated with autism include delayed learning of language; difficulty making eye contact or holding a conversation; difficulty with executive functioning (relating to reasoning and planning); narrow, intense interests; poor motor skills, and sensory sensitivities. A diagnosis of ASD is based on an analysis of all behaviors and their severity. The cause of autism is still being researched and debated, although doctors generally agree that the cause for autism spectrum disorder is unknown, but it is generally accepted that it is caused by abnormalities in brain structure or function.

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Autism awareness remains an important goal as early intervention has shown positive results for those on the spectrum, but also to relieve the stigma of those with special needs and the families that support them. Autism Eats is an organization that holds events at restaurants for families with children with autism. The events are able to provide a judgement-free environment for families that may often feel stressed or anxious at the thought of dining out. A stigma-free future is what awareness hopes to lead towards.

 

 

NeedyMeds has information on several resources available to children with autism and their families. Our Autism Diagnosis Information Page is designed to be the one-stop location to easily reach all the relevant information: we list commonly prescribed medications that link to any Patient Assistance Programs (PAPs) we have information on that may provide prescriptions at low or no cost. The Diagnosis Information Page links to our database of Diagnosis-Based Assistance (DBAs) programs that provide a variety of services from helping with living expenses, respite care, service animals, or durable medical equipment. We also link to our databases of recreational camps and academic scholarships that enable children and young adults on the autism spectrum to have fun experiences and continue their education. For more help finding information, call our toll-free helpline Monday-Friday 9am-5pm Eastern Time at 1-800-503-6897.AUTISM FB POST

Laws Proposed to Protect Patients from Artificially High Prescription Costs

In a previous blog post, we explored “clawback” and how it affects the prices of prescriptions. In short, Pharmacy Benefit Managers (PBMs) negotiate copay prices for insurers that are often higher than the cash price paid by uninsured patients all while instituting a “gag rule” for pharmacists to forbid them from revealing the price discrepancy to patients unless asked directly. A number of states have already passed laws banning clawback and gag rules, though a group of bipartisan U.S. senators have introduced a bill the ban gag clauses for PBM-negotiated contracts nationwide.

OLYMPUS DIGITAL CAMERAA recent study by Journal of the American Medical Association (JAMA) found that 23% of all prescriptions filled through insurance ended up costing more than patients who would pay out-of-pocket. Related to this, a national poll from West Health Institute/NORC at the University of Chicago found 32% of Americans didn’t buy a prescription or took less than the prescribed dosage due to cost. This all appears to be exacerbated by the continuing rise of prescription costs; in the past 14 months well known/high-use prescriptions rose an average of 20%, while less common prescriptions rose between 100% to 1,468%.

Pharmacists reportedly feel complicit in price gouging, and are often not allowed to offer information that could save patients money. However, if a customer specifically asks for a lower price option they are allowed to provide it. With this in mind, it is always a good idea to ask your pharmacist, “Is that the best price for my medication?” to ensure you are not becoming a victim of clawback or gag clauses.

No one should have to worry about being taken advantage of or sacrificing their health due to a lack in finances. For those without any prescription coverage or those who choose not to use it to avoid clawback, the NeedyMeds Drug Discount Card saves 0-80% on the cash price for prescribed medication. A plastic card can be ordered online or requested by calling our toll-free helpline at 800-503-6897, or a printable version can be found on our website as well as the NeedyMeds Storylines smartphone app on Apple and Android devices. For those still unable to afford their medications, NeedyMeds has an extensive database of Patient Assistance Programs (PAPs) that provide prescriptions for low or no cost. NeedyMeds also has information on Coupons and Rebates that can help lower the cost of necessary medications. For more help finding information, call our toll-free helpline Monday-Friday 9am-5pm Eastern Time at 1-800-503-6897.

LGBT Health Awareness Week 2018

The last week of March has been LGBT Health Awareness Week since 2003. We have gone over some of the barriers to health care for some of the transgender community in previous blog posts, but it remains important to bring awareness to the unique healthcare needs of lesbian, gay, bisexual, and transgender people and the health disparities that continue to beleaguer the lives of so many Americans.

rainbowcaduceusExperts report that LGBT people often avoid seeking out medical care or refrain from “coming out” to their healthcare provider. This compromises an entire community of lesbian, gay, bisexual, and transgender individuals who are at increased risk for several health threats when compared to heterosexual or cisgender peer groups: Gay men are at higher risk of HIV and other sexually transmitted infections; lesbians are less likely to get cancer screenings; transgender individuals are among the least likely to have health insurance along with risks from hormone replacement and atypical cancers. Even as youths, LGBT people are at higher risk of violence, depression, substance abuse, homelessness, and other suicide-related behaviors.

The Affordable Care Act (ACA) had helped over 10 million Americans gain insurance during the Obama administration. The ACA also prohibited health insurance marketplaces from discriminating on the basis of sexual orientation and gender identity. The 2015 Supreme Court ruling of Obergefell v. Hodges recognizing marriage between gay and lesbian couples throughout the United States led to more married couples to access their spouse’s health insurance.

 

The Trump administration has since dismantled many protections for equal access to care for LGBT people. Shortly after Trump took office, regulations to ban discrimination in Medicare and Medicaid were stopped and the White House declined to enforce the ACA’s anti-discrimination mandate, signalling they would roll back the rule. Throughout his first year, senior advisors for LGBT health were reassigned to less effective positions and questions regarding sexual orientation were removed from federal surveys. In late 2017, President Trump fired the Presidential Advisory Council on HIV/AIDS (PACHA) which concerned advocates believe is part of an “effort to erase LGBTQ people.” The mass dismissal followed six members resigning the previous summer, citing the Trump administration’s apparent disinterest in helping the HIV/AIDS community. In January 2018, it was announced the Department of Health and Human Services (HHS) would form a new Conscience and Religious Freedom Division that would functionally allow doctors to refuse treatment for those that go against their religious beliefs—further limiting access to care and undermining the civil rights, health, and well-being of LGBT people, women seeking reproductive health services, and others. Just this month, the HHS-operated Office for Women’s Health website removed the “lesbian and bisexual health” page and other related links.

The LGBT community continues to rank among the most underserved populations in terms of health care. Homophobia and stigma can negatively impact one’s ability to receive suitable care. Over 27% of transgender people in the U.S. report being denied health care. Mental health is a major concern for LGBT individuals often dealing with physical or emotional abuse, body dysmorphia, depression, or feeling unsafe at school or work, and there are still areas of the United States where finding sympathetic and appropriate help can be prohibitively difficult. If you are looking for a LGBT-friendly medical center, the Human Rights Campaign (HRC) has an interactive map with locations of over 1600 healthcare facilities in the United States. The HRC also has information on finding insurance for transgender-related healthcare, which can be a challenge for many transgender people even after the ACA.

To further help those in need, NeedyMeds has a growing list of programs in our Diagnosis-Based Assistance database for transgender/gender non-conforming people that offer various forms of assistance such as financial aid or legal services. NeedyMeds’ unique crowdfunding platform HEALfundr is also available for individuals trying to raise funds for their transition and other members of the LGBT community to receive appropriate health care. For more information, call our toll-free helpline at 1-800-503-6897 (open 9am to 5pm ET, Monday through Friday).

Which Health Websites Can I Trust? The Devil is In the Details

You wake up with a splitting headache and numb hands and feet. Your first move  —  assuming these symptoms aren’t tequila-related  —  is probably to consult Dr. Google.

Here’s a sample of the top ten pages for “headache numb hands feet”: You could have vitamin B12 deficiency, migraines, nerve damage, meningitis, Guillain-Barre syndrome, Bell’s palsy, fibromyalgia, brain cancer, or are going through menopause.

Let’s hope not all at the same time!

If you’re a regular patient of Dr. Google, you aren’t alone. Over 70% of internet users go online to learn about their health. Medical research that a few decades ago only doctors would be familiar with can now be accessed by anyone with a WiFi connection. And because the average doctor’s appointment lasts 13–16 minutes, the internet is the most convenient source for answers.

But convenience doesn’t come without costs. Instant access to health information has lead to the rise of “cyberchondria,” or anxiety related to diagnosing health problems using the internet.

The example above shows how crucial it is for today’s web user to learn how to navigate a tangle of conflicting, irrelevant, difficult, misleading, or downright false information. Otherwise you could wind up relying on bad advice or needless (and possibly dangerous and costly) tests and treatments.

How do you know your symptoms don’t signal brain tumors instead of the likely cause —  such as low blood pressure? Below we’ll look at a simple test to help you find online resources that are both high quality and relevant to your specific health situation. Best of all, you don’t need a medical degree to use it.

The T.R.A.A.P. Test, or Five Dimensions of Trustworthy Sources

Digital activist and entrepreneur Mitch Kapor compared getting information on the internet to “taking a drink from a fire hydrant.” That’s why we recommend all internet users practice the T.R.A.A.P. test. This simple tool can help you manage your browsing experience by filtering out low quality resources.

The T.R.A.A.P. test asks you to evaluate five dimensions of any information source:

“T” for Timeliness. In 1950 it was estimated that medical knowledge doubled every 50 years. In 1980, it doubled every 7 years. In 2010, doubling occurred in half that time, or every 3.5 years. Researchers now believe that by 2020, medical knowledge will double every 73 days.

High quality sources will convey stable scientific agreement. But because major medical breakthroughs occur every day, they should also incorporate significant developments in the field or promising alternatives based on sound evidence.

How can you determine a source’s timeliness? Websites publish a copyright date at the bottom of the page, though this can only tell you whether or not the website is still operating.

Instead, look for the age of the materials themselves — publication dates, when (or if) they’ve been updated, and how recent the research references are. Trustworthy websites review and update their content as needed and publish those dates for readers.

A good measure of timeliness is 2–3 years. Anything older than that is likely due for an update.

Questions to ask: How current is the information I’m reading? When was it published? Has it been updated in light of recent breakthroughs? How old are the sources it references? Are the links still functional?

Red flags: No dates of publication or revision, dates that are more than 2–3 years old, research that doesn’t incorporate medical developments, citations that go nowhere

“R” for Relevance. Most health-related Google searches return thousands of results. You may not struggle to find reading material, but chances are much of it won’t be relevant.

In 2012 a group of researchers studied the quality of infant sleep safety information  on the internet. They found that an alarming 28% of 1,300 websites contained irrelevant information. Those are terrible odds for parents researching how to keep their infants safe.

Just because a treatment worked for one person doesn’t mean it will help someone else. Despite this, studies show that “consumers tend to give more credibility to testimonials coming from people with whom they have something in common,” even if those similarities aren’t related to the health issue at hand.

Context and medical history matter. Be wary of recommendations that don’t apply to you or your loved ones. It always helps to have a trusted primary care doctor available who can put the information you find into the context of your own life. You should also prepare a research checklist beforehand to help you stay on track while you browse.

Finally, when reading information online, make sure you’re among the author’s intended audience. Knowing that much will prevent you from taking irrelevant advice that sounds appealing but doesn’t address the topic of interest.

Questions to ask: Is this information relevant to what I’m looking for? Am I the right audience for this? Can I find more appropriate information elsewhere?

Red flags: Information unrelated to the topic(s) you’re researching, materials that are either too simplistic or advanced for your needs, personal testimonies based on someone else’s health history

“A” for Authority. You probably don’t take financial advice from your teenager. But how many of us would brush off investment tips from Warren Buffet?

That’s because experience still counts for something. We tend to respect people and organizations whose perspective is reputable, experienced, and insightful. Yet when it comes to health content, we fall for headlines that grab our attention with exciting, sensationalized claims — even if there’s no substance behind them.

The good news is we can assess a website’s authority using basic web browsing skills. First take note of the website’s domain extension. Common ones include:

●   .com (commercial)

●   .gov (government)

●   .org (organization)

●   .edu (education)

●   .mil (military)

Government websites like the National Institutes of Health are considered the most credible resources, followed by educational websites. These institutions can access cutting-edge research, and their content is almost always reviewed by authorities in the field. Such websites commonly recommend other resources they trust, too.

You can learn even more about a website’s authority by reading their “About Us” page. Try to locate an editorial policy or background on who’s responsible for writing the content. Websites sponsored by nonprofit or research institutions may have your interests in mind more than those funded by a pharmaceutical or marketing company. Always be skeptical of websites where the sponsorship information is vague or hard to find.

Bottom line: Don’t risk your health on the word of somebody who isn’t qualified to give medical guidance.

Questions to ask: Who wrote this? Do they have the proper background? Who sponsors the website, and what’s their reputation? Is their editorial policy transparent? Can I easily contact the owners?

Red flags: Conflicts of interest, poor reputation in the field, non-expert writers, no authorial attribution, difficult-to-find contact information, vague or profit-seeking mission

“A” for Accuracy. Ever hear of confirmation bias? It’s a cognitive phenomenon that makes you more likely to find and retain information that fits in line with your current beliefs and behaviors. Whatever contradicts your view of the world is conveniently overlooked or discredited.

Confirmation bias is dangerous when researching health topics. If you think you have  (or don’t have)  a specific diagnosis, odds are you will drift toward content that supports your expectations. An example is how people who drink alcohol are more receptive to studies that conclude moderate drinking is good for your brain compared to research that suggests the opposite.

To prevent the effects of bias, compare several resources on the same topic to see how they stand up against one another, even if they offer conflicting advice. Accurate health information will aim to provide complete coverage of a topic including both the pros and cons of treatment, associated medical costs, long-term outcomes, and admissions of the unknown.

If one website’s content is strikingly different than what you find elsewhere, look hard at the quality of evidence it uses. Is it too good to be true? Are the conclusions opinion-based rather than evidence-based? Does the content say something different than the evidence it’s based on?

Keep in mind that most health information online is summarized from complex scholarly literature. It’s possible the author may not have the experience to interpret the materials accurately, especially if they’re not an expert in the field.

Above all, try not to let your personal assumptions steer you away from quality materials just because you don’t agree with the conclusions.

Questions to ask: Does the website favor one side of the debate? How does this website compare to other websites covering the same topic? What’s the value of its supporting evidence? Are my expectations guiding my research?

Red flags: Blatantly false information, no references or data sources, information that isn’t or can’t be verified, reliance on personal testimonies, opinions masquerading as evidence, numerous typographical errors

“P” for Purpose. If this era of fake news has taught us anything, it’s that many “neutral” websites have their own vested interests. Sometimes the product being sold is a worldview, like websites that falsely link vaccines with autism. More commonly, health websites sell literal products like vitamins and supplements, wonder cures, VIP content, etc.

Help yourself by sticking to websites that promote an educational mission over a commercial one. Articles filled with sales pitches may reveal ulterior motives, whereas government, educational, and nonprofit websites generally want to keep their readers informed more than anything else.

Again, you can learn about a website’s purpose on the “About Us” page or through its mission statement. Both should be easy to locate and provide an obvious purpose so that you know what to expect from the site’s content.

Another way to evaluate purpose is by looking at a website’s advertisements. Most websites rely on advertising to cover operation costs, so the presence of advertising or sponsored content isn’t a credibility-killer. Be wary, though, if you can’t distinguish between paid advertisements and health content, or if the advertisements promote pseudo-scientific products.

Questions to ask: Why did the person or group create this page? What is the author’s tone or angle, and how might they benefit? Is there bias at play? Am I being pushed to buy something? Are the advertisements labeled as such?

Red flags: Excessive promotion of a product or service, claiming there’s a “cure all,” persuading readers to adopt the writer’s personal biases, advertisements that mimic impartial content or promote pseudo-science

Don’t Let Health Websites Substitute for Medical Care

Even the most trusted health websites, like doctors, make mistakes. But talking to an experienced doctor about the information you find online allows you to exert control over your health while also staying grounded.

That’s why HealthWeb Navigator publishes reviews of health-related websites written by medical professionals. On our website, you can see which resources healthcare providers trust the most — and which ones they avoid.

Want to learn more strategies for finding high quality health websites on the internet? Watch our recorded webinar:

And lastly, if you’re worried about your health after reading something on the web, here’s a little parting advice from NeedyMeds President Dr. Rich Sagall: “When you hear hoofbeats, it’s probably horses, not zebras.”

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