5 questions with health literacy expert Beccah Rothschild

Below is some valuable advice from my colleague/friend, Beccah. 

Thanks to Amino / Sophia Lee / March 6, 2018

Last week, we sat down with with Beccah Rothschild, a health and adult literacy expert with more than 20 years of experience in the field. Her passion revolves around ensuring that information is accessible and available to everyone — regardless of educational, literacy, cultural, or linguistic background. In this Q&A, we cover topics that range from tips for effectively educating people on healthcare to the role employers play in protecting their employees from financial harm.

Q1: You educate patients about the overuse of healthcare treatments. What are some commonly over prescribed treatments, and what is your advice to get people to think twice about them?

Examples of commonly overused tests, procedures, and medications include antibiotics for colds, imaging tests for low back pain and headaches, and C-sections in healthy pregnancies. These may not be the most overused treatments or tests, but they’re ones healthcare consumers frequently encounter. Another interesting overuse case is the Pap test. For a long time, the standard was to get one annually, but the latest research shows that most women — depending on their age, medical history, and risks — only need one every three to five years. When I started to write about this topic, a lot of women — especially aged 45-50 and above — pushed back saying they were taught to get it every year. It’s interesting because these women don’t actually want to get this uncomfortable test done annually (who would?), but it just goes to show how challenging it is to change the culture around medical testing.

In terms of my best advice, I’ve found that if you talk in generalities about the physical and financial harm of overuse, people are less inclined to act in their best interest. For instance, if you say: “ordering unnecessary tests makes insurance premiums go up and causes people to pay more for care,” it doesn’t resonate because it doesn’t hit you personally. But if you say: “if you get this test done, you’re going to pay $2,000 out-of-pocket for something that you don’t need — and might even harm you,” it clicks. You really need to appeal to people on a personal level.

Q2: What role do employers play in helping their employees with regard to health literacy?

The employer has a huge responsibility to ensure that the health insurance information employees receive is readable, understandable, and written in a way that’s not full of jargon. The average person doesn’t understand what a deductible, copay, or coinsurance is, so the employer has the obligation to make sure this type of information is provided in a way that employees can understand, use, and act on it.

Insurance companies play a role in this as well. Fortunately, insurance companies have really stepped up to try and make materials easier to understand — but there’s still a long ways to go. There’s been huge progress though compared to back in 2003 or 2004 when health literacy was just becoming a much wider-known issue, which is around when I was involved in starting up the California Health Literacy Initiative — the first statewide health literacy project ever. Ultimately, it must be a shared responsibility between both insurance companies and employers to make sure the healthcare they provide is easy to understand and access.

It’s also important for employees to trust the information from their employers. A good way to do this is for employers to share information that’s data-driven, evidence-based, and comes from a trusted third-party. People also need to understand that the information they’re getting from their employer isn’t going to impact their benefits. It’s common for employees to be worried about going to the HR or management and saying “I’m considering getting pregnant” or “I have a chronic condition” because they fear retribution, judgement, being passed over for a promotion, or having certain benefits taken away.

Q3: What’s your advice for chronically ill patients who frequently interact with the healthcare system?

Ask questions and take notes. A few years ago, my mom — who lives across the country from me — simultaneously had two cancers. For every single appointment, my parents conference called me in. And before every appointment, I would send them a list of questions ahead of time. You would never go into a meeting without an agenda, so why would you go to a doctor’s appointment without one?

While on the call, I would take notes verbatim while my dad asked the questions. Doctors knew that I was on the phone and taking notes, so it was very transparent — especially when I would pipe in with clarifying questions. After the appointment, I would write up the notes and distribute them to members of the family so we all knew exactly what was going on and could follow up with more questions if needed. If you don’t do this, or some version of this, you leave the appointment and forget things or perhaps misinterpret them. You can also always ask at your appointment if you can record the conversation. And if the doctor says no, find someone else to go to. Don’t forget that the healthcare provider works for you, not the other way around. I can’t stress that enough.

Q4: What are your biggest takeaways when it comes to educating people about healthcare?

I would say there are two major takeaways:

Keep it short and simple. It’s hard to do this because healthcare is so complex. I always want people to have all the information possible so they can make the best decision. But what I learned is that very few people want that — whether it’s an executive in the C-suite or someone with limited literacy skills, most people don’t have the time or capability to read through so much information.

If you tell someone what not to do, you also have to tell them what to do. It’s important to frame things in a positive way for people who are in pain, frustrated by their situations, or scared. For instance, if you say “it’s not a good idea to get treatment ABC,” you should also say “instead, I’m going to give you XYZ and it will still help you.” People need to be reassured that they have options and that they’re going to be ok.

Q5: If you could wave a magic wand and make a single change to improve the future of health literacy, what would you wish for?

I would do a major overhaul of our culture of healthcare. I wish it would change so that patients understand they are consumers and see healthcare as a consumer good. For instance, when you go to buy a car or fridge, you always ask how much it costs, how long it will last — and you negotiate on the price. But when it comes to healthcare, people don’t know that the price of filling a prescription varies widely depending on where you go. They don’t know that you can negotiate costs with a hospital if you’re paying out-of-pocket or with cash. They don’t know that the quality of care varies wildly. And it’s all because they don’t think of healthcare as a consumer good, so they don’t ask the important questions. I want to shake up the culture of healthcare and make these conversations actually happen.

https://amino.com/blog/5-questions-with-health-literacy-expert-beccah-rothschild/

Is there a cure for high drug prices?

Anyone who takes medication realizes how much the cost has risen. 
Bernie Sanders gave CR's article "A Must Read" designation on his website.

Consumer Reports / updated July 29, 2016

The cost of prescription drugs for tens of millions of Americans rose $2 billion last year, and all signs point to a continued rise. At stake is nothing less than the ability of Americans to afford the medicines they need. Can we stop the madness?

Last August, Martin Shkreli, then the CEO of Turing Pharmaceuticals, did something considered so reprehensible that he was dubbed “the most hated man in America.” What caused the outrage? He increased the price of a little-known but important drug called Daraprim from $13.50 to $750 per pill. Daraprim is the best treatment for toxoplasmosis, an infection to which those with HIV/AIDs or cancer are susceptible.

The story went viral, and calls came from around the country, including from U.S. Rep. Elijah Cummings, D-Md., to stop drug entrepreneurs from gouging consumers for pure profit. Overnight, Shkreli became the poster child of pharmaceutical greed. And yet raising the price of a drug by that much is 100 percent legal.

What makes the case of Daraprim so important is that it brought a serious—and growing—healthcare problem out into the open: America spends a tremendous amount of money for prescription drugs—$424 billion last year alone before discounts, according to a new report by IMS Institute for Healthcare Informatics, a firm that tracks the pharmaceutical industry. And that number is rising fast with no sign of slowing down. What’s more, there are few regulations that shield consumers from the Martin Shkrelis of the world, or from drug companies that decide to raise prices to astronomical levels.

The Rampant Rise of Drug Prices

The practice of raising drug prices on new—and old—medications is common and widespread. From a nationally representative telephone poll conducted by Consumer Reports Best Buy Drugs in March, we learned that three in 10 Americans (about 32 million people) were hit with price hikes within the previous 12 months, costing them an average of $63 more for a drug they routinely take—and a few paid $500 or more. We also found price increases on everything from longtime generics used to treat common conditions such as diabetes, high blood pressure, and high cholesterol to new treatments for diseases such as hepatitis C. Our poll shows that when people were hit with higher drug costs, they were more likely to take unhealthy measures such as skipping doctor appointments, tests, or procedures, or not filling their prescriptions or taking them as directed.T

Take the case of Marlene Condon, a nature writer living in Crozet, Va. Two years ago she paid about $32 for 180 tablets of hydroxychloroquine (a generic available for almost two decades) to treat her rheumatoid arthritis. When the drug’s price more than doubled to $75, Condon says she was annoyed but paid the bill anyway. Then, last September, the price of her drug skyrocketed, costing her $500 out of pocket. Condon panicked and did what thousands of Americans do under those circumstances: She stopped taking the drug. Her arthritis pain grew much worse. Walking and doing simple household chores such as washing the dishes became almost impossible.

The Forces of Profit

Our analysis suggests that high prices for generic and brand-name drugs stem in part from a battle over profit between mammoth industries—big pharma and insurance companies—with consumers caught in the middle. On the one hand, pharmaceutical companies blame insurance companies for passing along high costs to consumers. And insurance companies point to very high-priced drugs for which there are few or no alternatives, which ultimately affects how much insurance coverage people receive and how much they must pay out of their pockets.

“Even as more patients have health insurance coverage, many more are facing high pharmacy deductibles and rising out-of-pocket costs, and other barriers to care, putting their ability to stay on needed therapy at risk,” says Holly Campbell, a representative at PhRMA, an industry association that represents pharmaceutical manufacturers.

“If there’s one treatment and there’s no alternative and no competition, then that’s where the challenge is,” says Matt Eyles, executive vice president of policy and regulatory affairs at America’s Health Insurance Plans (AHIP), a national trade organization for the insurance industry.

Click for more info: http://www.consumerreports.org/drugs/cure-for-high-drug-prices/

• Reason 1: Drug Companies Can Charge Whatever Price They Want
• Reason 2: Insurance Companies Are Also Charging You More
Reason 3: Old Drugs Are Reformulated as Costly ‘New’ Drugs
• Reason 4: Generic Drug Shortages Can Trigger Massive Price Increases
• Reason 5: Specialty Drugs Are Costing All of Us

What the Government Can Do

Consumers are looking to the government to take action to control drug prices. In our CR Best Buy Drugs poll, 77 percent of people taking a medication said the government should allow more generics onto the market sooner; 74 percent want the government to pressure drug companies to charge less. Seventy-nine percent say insurers should pressure pharmaceutical companies to lower drug prices; 81 percent said consumers should do the same.

More specific steps that could help control costs include asking the government to:

• Set a limit on out-of-pocket costs. That would ensure that consumers have some protection against very high costs or sudden large spikes in prices. For example, last year California enacted a law so that a consumer won’t pay more than $250 for a single prescription drug per month, or $500 for certain high-deductible plans.
• Approve more generic versions of common drugs. Currently, 4,300 generic drug applications await an FDA decision. The agency says it’s working to review new applications within 15 months.
• Allow limited importation of drugs from legitimate Canadian and European sources, which currently is illegal under U.S. law. The ability to import drugs from countries that have a regulatory system similar to that of the U.S. could alleviate shortages or moderate prices.
• Use government’s existing “march-in” rights. It works like this: If there is a problem with the public’s access to a drug (a supply shortage or an exorbitant price), and if a drug was developed using taxpayer money, the Department of Health and Human Services has the right to force the company to allow another manufacturer to make generic versions that are cheaper for the consumer.

What Drug Companies Can Do

The most obvious help pharmaceutical makers can provide is to charge less—or at least slow the pace of price increases. There is a precedent: Rising drug prices in the 1990s led to public outcry and congressional hearings. And fearing price controls, nine drug companies, led by Merck, made a pledge to keep price increases at or below increases in inflation.

“Pharma has a right to make a profit,” says Riley of the ACP, but it also has a “moral obligation” to be transparent about its pricing because it benefits greatly from government-funded research. “The American taxpayer has been providing the venture capital to fund their products,” he says. “The public deserves to realize a return on that investment in the form of medications they can afford.” But pharmaceutical industry representatives think the focus on price alone is misguided and threatens “to squander our opportunity to usher in the next wave of medical progress,” says Campbell at PhRMA. States are starting to fight back. This past June, Vermont passed the first legislation in the U.S. that requires drug companies to justify high costs and price increases, and to calculate the financial effect on insurance premiums with a select set of drugs. California is currently considering a similar bill.

What Consumers Can Do

Although much of drug pricing is out of consumers’ hands, consider these tips to find the best deals at the pharmacy:

• Talk to your doctor about the cost of the drug she is prescribing. For less expensive alternatives,ask about generics, which can cost up to 90 percent less. Your doctor might consider “therapeutic substitution”—a different drug that works as well. If your insurance drops or reduces coverage of a drug, your doctor can also help by appealing to your insurance company for an exception to cover the drug anyway. The administrative process for filing the exception is different with each insurance company and can take a few weeks before a decision is made.
• Shop around and negotiate. Consumer Reports’ secret shoppers have found that retail drug prices can vary widely, even within the same ZIP code. Our shoppers also found that asking, “Is this your lowest price?” could get you further discounts.
• Check online. If you pay out of pocket, check GoodRx to learn a drug’s “fair price.” You can also fill a prescription with a low-cost online pharmacy based in the U.S., such as HealthWarehouse.com. Be careful of fraudulent websites: Use only an online retailer that operates within the U.S. and displays the VIPPS symbol to show that it’s a Verified Internet Pharmacy Practice Site.
• Choose a plan that covers the medications you need. Compare plans during your open-enrollment period because coverage may change from year to year. Keep in mind that high-deductible plans have lower premiums but require you to pay a larger chunk of your drug costs.

Consumer Reports Is Working to Lower Drug Costs

You are outraged by rising drug costs, and we’ve listened. Because we do not accept money from the pharmaceutical industry, we can call it like it is. If a drug is too risky or a poor value, we are not afraid to say so. We want your voice to be heard by industry and government. We are advocating for a range of evidence-based solutions for lowering consumers’ out-of-pocket costs, ensuring access to essential medicines, and getting better value for our country’s prescription-drug spending—without sacrificing safety or effectiveness. See ConsumerReports.org/drugprices for more.

Editor's Note: This article also appeared in the August 2016 issue of Consumer Reports magazine.

Funding for the preparation of this article was provided in part by the Atlantic Philanthropies and by a grant from the state Attorney General Consumer and Prescriber Education Grant Program, which is funded by the multistate settlement of consumerfraud claims regarding the marketing of the prescription drug Neurontin (gabapentin).

*Clarification, July 29, 2016: An earlier version of this article indicated that Woodard’s injection lasts about a week. He gives himself a daily injection from a pen that lasts about a week.

Click for full article and more info: http://www.consumerreports.org/drugs/cure-for-high-drug-prices/

Expensive pill to swallow

CBS This Morning
DECEMBER 1, 2015

Consumer Reports investigates prescription drug sticker shock

Americans spent $374 billion on prescription drugs last year, but only 17 percent of people shop around for a lower price. Consumer Reports found that some people spend up to 10 times more than is necessary for common medications. Consumer Reports prescription drug editor Lisa Gill joins "CBS This Morning" to discuss the results of its national survey.

http://www.cbsnews.com/videos/consumer-reports-investigates-prescription-drug-sticker-shock/

Purchasing medicine outside the US

Is it OK to buy medicine online? Some people get prescription drugs from Internet sites outside of the U.S., but there are safer ways to save. 

Consumer Reports

Published: August 30, 2015 06:00 AM

Almost 60 percent of those surveyed last June by the Consumer Reports National Research Center said they’re trying to cut health care costs. Many of them said they get bargains on medications, for example, by buying them from online pharmacies outside the U.S. In fact, based on the survey, the center estimates that 1.9 million Americans buy medications that way.

It’s not terribly risky to order a toaster online, but it is when you fill prescriptions through Internet pharmacies. Cyberspace is rife with sellers peddling illegal and even toxic products, often through websites that appear to be authentic.

“The vast majority of websites selling prescription drugs are not legitimate,” says Carmen Catizone, D.Ph., executive director of the National Association of Boards of Pharmacy (NABP). Last June, for example, the Food and Drug Administration (FDA) took action against more than 1,050 sites, seizing products being sold fraudulently as FDA-approved prescription drugs and medical devices. And Catizone points out that of the almost 11,000 online drug outlets that NABP recently reviewed, only about 4 percent were operating according to U.S. laws and standards.

Online drug dangers

Rogue pharmacies often sell unapproved drugs that are counterfeit or poorly made, according to recent reports from the Government Accountability Office. Medications sold through those websites have been found to contain too much or too little of a drug’s active ingredient, or in some cases, a different drug entirely. Some drugs have even been found to contain dangerous contaminants, including toxic yellow highway paint, heavy metals, and rat poison.

“In the worst cases, people have died because medications contained toxins or didn’t treat their serious medical conditions,” Catizone says.

Ordering from those sites also puts your personal and financial information at risk. You may find yourself inundated with spam e-mail or your computer could be infected by a virus.

In addition, it’s illegal to order drugs from outside the U.S., so you may never receive what you ordered. And if the prescription is filled incorrectly or the drug contains ingredients that make you sick, you have no legal recourse.

Safer strategies

“There are legitimate online pharmacies,” says Lyndsay Meyer, an FDA spokeswoman. “But consumers need to be careful and know what to look for.”

If you choose to order online, make sure that the site is licensed, requires you to submit prescriptions, has a state-licensed pharmacist available to answer questions, and is within the U.S. (You may want to stick with the websites of drugstores you already know and trust, those connected to chain stores, big-box stores, and local mom and pop pharmacies.)

Want an easy way to tell whether an Internet pharmacy is safe and legal? Look for “.pharmacy” at the end of the Web address, which indicates that the site is licensed and has been verified by the NABP. (Only U.S.-based sites with “.pharmacy” in the URL will ship to U.S. addresses.) Or look for the seal from the Verified Internet Pharmacy Practice Sites program, or VIPPS, indicating that the company completed voluntary accreditation through the NABP. For a list of accredited sites (and those not recommended), go to nabp.net.

But you can save money on prescriptions without going online. Many stores offer deeply discounted generic drugs, and some also offer loyalty programs that give discounts to members.

About 'Canadian' sites

Many consumers think that they can sidestep any potential danger associated with ordering medications online by getting them from Canada, where the laws governing their sale are similar to those in the U.S. But our Best Buy Drugs experts advise against that (or ordering them from any other country). Here’s why: Internet pharmacies claiming to be Canadian usually aren’t. “Most are fake storefronts selling low-quality products from Third World countries,” explains Carmen Catizone of the National Association of Boards of Pharmacy.

Find out the surprising ways to save money on your prescription drugs.

Prescription Drug Savings

Shopping Around Brings Steep Prescription Drug Savings, Report Finds


THURSDAY, March 28 (HealthDay News) — Prescription drug prices at U.S. pharmacies can vary widely, and failing to shop around could result in people overpaying by as much as $100 or more a month on average, depending on the drug, a new study finds.

Researchers at Consumer Reports called more than 200 pharmacies across the United States to get retail prices (out-of-pocket costs) for a one-month supply of five popular medicines that have recently gone generic.

The medicines were: the diabetes drug Actos (pioglitazone); the antidepressant Lexapro (escitalopram); the cholesterol-lowering drug Lipitor (atorvastatin); the blood thinner Plavix (clopidogrel); and the asthma drug Singulair (montelukast).

For a one-month supply of these drugs, there was a $749 difference between the highest- and lowest-priced stores — a more than four-fold difference, according to the study in the May issue of Consumer Reports magazine.

Overall, Costco outlets had the lowest retail prices and CVS had the highest, the report found. Among the specific findings:

A month’s supply of generic Lipitor cost $17 at Costco, compared with $150 at CVS. Prices at Rite Aid and Target were also high.

A month’s supply of generic Lexapro cost $7 at Costco and $126 at CVS. On average, Rite Aid, Walgreens and grocery store pharmacies also charged higher prices.

A month’s supply of generic Plavix cost $12 at HealthWarehouse.com and $15 at Costco, compared with $180 at CVS.

Different business approaches are one reason for the wide price variations, according to Lisa Gill, prescription drugs editor at Consumer Reports.

“It really comes down to a store’s business model. For example, big box stores tend to use their pharmacies as a way to get consumers through the door with the expectation that they’ll buy other things,” she explained in a Consumer Reports news release.

If you want to get the best deals, shop around and always request the lowest price, Gill advised.

“A consumer can’t assume that the price of their prescription medications is set in stone,” she said. “One of the big takeaways is that you have to ask for the best price and see if your pharmacist will work with you. Especially for the independent pharmacies, if they want to retain your business and loyalty, they will help you get the best price,” she said.

Other ways to save money include:

Using generic drugs, which contain the same active ingredients as brand name drugs.

Getting refills for 90 days, not 30 days. Most pharmacies offer price reductions on a three-month supply of a medicine.

Look for other discounts. All chain and big-box pharmacies offer discount generic drug programs, with some selling hundreds of generic drugs for $4 a month or $10 for a three-month supply.

Try shopping in rural areas. The study found that some grocery store pharmacies and independent drug stores had higher prices in cities than in rural locations. For example, a 30-day supply of generic Actos cost $203 at a pharmacy in Raleigh, N.C., compared with $37 at a pharmacy in a rural area of the state.