Financing the healthcare of tomorrow playlist: Tracks for consumers and policymakers

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By Robin Strongin, Health Policy Director

July 12, 2023

My husband has advanced Lewy Body Dementia and one of the few things we can still enjoy together is listening to music. We used to curate playlists for all kinds of music. We even put together playlists to mark special occasions (like our daughter’s wedding). Really, any topic became fair game for a playlist.

I was invited to speak at the Patients Rising Disrupting Healthcare Summit summer conference in Washington DC. My panel topic was Financing the Healthcare of Tomorrow. As I was preparing my presentation, I spoke with Michael Capaldi, Executive Director, the Institute for Gene Therapies. Mike is an expert on gene and cell therapies, and these therapies are definitely the healthcare of tomorrow, although thankfully, we are beginning to see the promise of these therapies today. When we talked about my presentation, he said, “you know, Robin, patients are really at a crossroads:  on the one hand, they are much more educated and empowered about their care, but some of the new therapies on the horizon are so complex, the cost and time commitments to innovate in these areas are so high, that groups like the National Consumers League [i]are in position to help patients and caregivers understand these complexities.”

And that’s when it hit me. A playlist. My colleague had me at Crossroads. If you’re a fan of delta blues, like my husband and me, then you know Robert Johnson and his classic, Crossroads.  The rest of my remarks rounded out my Financing the Healthcare of Tomorrow Playlist: Tracks for Consumers and Policymakers, which include:

Crossroads (Robert Johnson)—Robert Johnson’s haunting work reminds me of the difficult choices health policymakers have to make when it comes to healthcare financing—of course research and innovation are expensive—the diseases for which there are no cures, the conditions crying out for prevention, are complex and require decades of research, a deep understanding of basic science, and navigating an unpredictable regulatory path. Too many diseases and too few resources lead to heartbreaking trade-offs. Patients also have difficult choices to make when it comes to paying for their care. We shouldn’t have to be making deals with the devil—as Robert Johnson sings about in Crossroads. Instead, we need to reframe the questions we ask, review how we prioritize funding streams, and think creatively about financing mechanisms. Rather than question if society spends too much on healthcare, we should be asking how can we spend it more efficiently? How do we adequately incentivize all involved in funding transformational innovation? How do we make sure patients can afford and access the treatment they need?

I Am Woman (Helen Redding)—it gets really old but here we are, still talking about, and working on, closing the gender gap—in raising capital for venture funding for women-lead innovation teams; and in awarding grants to women lead research teams. Did you know, that according to the NIH Database monitoring NIH grants, grants awarded to women lead teams in 2022 numbered 19,028 and in the same year men won 31, 560 NIH grants? Progress yes, but not good enough. Not even close. Why is this important?  Because the teams with funding ask the research questions. The more diverse the research teams, the broader the array of diseases that are studied. More cures for more people.

Your Cheatin’ Heart (Hank Williams, Jr.)—I want to be careful and not paint all hospitals with the same brush but I would be remiss not to point out that too many hospitals are behaving badly: taking huge advantage of their nonprofit status, aggressively placing liens on patients who can’t afford their care, engaging in abusive debt collection activities, and worse, denying care; manipulating the 340B program designed 30 years ago to enable true safety-net providers to help low-income and other vulnerable patients access more affordable medicines and healthcare services. Some entities participating in the 340B program have taken advantage of the program’s current lack of clarity at the expense of the patients that the program is meant to serve.

Bad to the Bone (George Thorogood) – When it comes to taking advantage of our healthcare system, one major player in the drug pricing process might be considered “bad to the bone” – pharmacy benefit managers, or PBMs. PBMs continue to find ways to increase their profits while consumers are forced to pay high out-of-pocket costs for the prescription medicines they need. Although they were intended to help negotiate savings on medicines (which would be good), they are not passing along discounts to patients and are actually incentivized to steer patients to higher cost medicines – b-b-b-b-bad to the bone if you ask me!

Party Like It’s 1999 (Prince)—Shakespeare asked, What’s in a name? Fair question. Reminds me to also ask, what’s in a definition and when is it time to update it? How we defined value, quality (as in value of care, quality of care) and other terms in 1999, needs to be reevaluated on an ongoing basis. New innovations, insights, and understandings necessitate we revisit how we define, measure, and update the terms and metrics used to make decisions that affect healthcare financing. A great example comes from another colleague[ii]  who has co-authored and published compelling work on a “paradigm shift in managing high blood pressure.” He and his colleagues make the case that “Abandoning the view that hypertension is a disease in favor of regarding it as a cause of a disease and hence, adopting a population-based preventive approach would encourage the development of simpler guidelines.” Refreshed decades old thinking that could yield the elusive results the status quo has not achieved seems worthy of a party, like its 2023.

I Will Survive (Gloria Gaynor) and Stayin’ Alive (The Bee Gees)—Really, isn’t this what we are all trying to do?

A Change Is Gonna Come (Sam Cooke)—for patients like my husband, for our family, and for all the other patients and caregivers, change cannot come soon enough.  I pledge to do everything possible to advocate for meaningful change and help Patients Rising.

[i] I direct health policy for National Consumers League

[ii] Wald, Nicholas J., Wald, David S., Kellermann, Arthur L., “When Guidelines Cause Hypertension,” Commentary, The American Journal of Medicine, 2018, pp. 1402-4.

Meet the top ten scams – #4 phishing scams – National Consumers League

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This is part four of our 10-part series taking a closer look at the top scams of 2012. The number four scam reported to NCL’s Fraud Center in 2012 was phishing scams. To see an overview of our complete report on the top scams of the year, visit our Web site at nclnet.org. Phishing scams clocked in at #4 on NCL’s 2013 Top Ten Scams report. These scams, come in a practically infinite number of variations, but a common theme involves a scammer getting their marks to click on malicious Web links or otherwise divulge sensitive information.

Through the installation of tracking software on a victim’s computer or getting the victim to divulge sensitive information voluntarily scammers are able to get the information they need to commit identity theft or other frauds. Phishing emails often are made to look like they come from a trusted entity, such as a bank or other financial institutions, complete with logos or other graphics that make the emails look legitimate. Warning signs of phishing scams include:

  • Requests to “verify” information (such as a social security number, a bank PIN numbers, credit card account numbers, etc.)
  • E-mails from organizations that contain misspellings and/or poor grammar
  • Calls or e-mails from organizations that threaten to close accounts
  • Links or pop-ups that direct the users to unusual websites (such as .ru, .cn or other overseas web domains)
  • E-mails that do not contain your name

To ensure that more people are not tricked by one of these scams, consumers should take the following precautions:

  • If an unsolicited email or phone call from your financial institution asks for personal information, do not reply. If you are concerned about your account, contact the financial institution directly via the phone number or website listed on your statement
  • Take precautions to keep your computer secure. This includes ensuring that your e-mail provider and/or security provider scans email for threats and scans your computer for viruses regularly.
  • Do not click on links or open attachments in emails from people you do not know
  • If you are concerned that you’ve been a victim of a phishing scam, contact your financial institutions (banks, credit cards companies, etc.) and ask them to put a fraud alert on your account. You should also contact the three major credit reporting bureaus (Equifax, Experian and TransUnion) to alert them to the possibility of unauthorized individuals attempting to take out loans in your name.

For more information on phishing, please visit https://www.phishinginfo.org/

Why Anthony Stokes should not have been removed from the transplant list – National Consumers League

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According to news reports today, Children’s Healthcare of Atlanta refused to put Anthony Stokes, a 15-year-old boy with an enlarged heart, on the heart transplant list due to his failures to take his medication as directed.

The doctors claimed his previous issues with non-compliance should bar him from being eligible for a new heart. What sad news coming out of Atlanta! As advocates, we believe we must educate patients that are non-adherent, not punish them. Three out of every four Americans do not take their medication as directed, making non-compliance a flimsy excuse for refusing to treat someone or eliminating their path to a potentially life-saving procedure. Non-adherence is a widespread and complicated issue that requires communication and support from doctors and healthcare providers. If the doctors feared a heart transplant would be unsuccessful because the patient didn’t take his medications properly, the onus should be on them to educate the patient as to why adherence is necessary to improve overall health results. Did his doctors take the time to ask him WHY he wasn’t taking his medication as directed? To find out more information about the importance of taking medications as directed and pledge that you will adhere please visit ScriptYourfuture.org.

The Faces of LifeSmarts — Lois Johnson – National Consumers League

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Lois Johnson, the 2013 LifeSmarts Coach of the Year with LifeSmarts Program Director Lisa Hertzberg. Lois Johnson has six kids, seven grandkids, and 100’s of LifeSmarts kids. She has been coaching for 16 years, continually expanding her LifeSmarts family. Johnson has now entered her last year coaching the program.

Retirement lies ahead, but first she aims to lead Willow River High School to a seventh consecutive Minnesota state championship and a trip to Orlando for the 2014 national championship. Throughout her years participating in LifeSmarts, Johnson has had her fair share of laughs, tears, and heart palpitations. “I get really nervous during competitions,” says Johnson. “I just put my head down on the table; I can’t even look.” A few years ago, Dougie, a special education student from Willow River, a K-12 school with fewer than 500 students, enrolled in Johnson’s LifeSmarts class.

Initially, Johnson was skeptical that he could beat out many of his fellow students and earn a spot on the 5-person team, which was headed to the state competition, but through hard work and hours of studying, he did. During the competition, Johnson assumed her position—head down on the table, eyes closed— as she tried to suppress her nerves. “Suddenly everyone gasped,” said Johnson. “I looked up, it was a crucial point in the match, and Dougie had just buzzed in. He got the question right and then proceeded to get two or three more questions right. It was something from a movie, he was so excited. This little special education student was so shy, and here he was answering questions, and you could see his confidence growing. The whole experience was…” after a long pause, “life changing.”

LifeSmarts is a program designed to prepare all students, not just straight-A students, for the basics skills they need to navigate life’s pitfalls and obstacles. “The information is so practical,” Johnson explains. “You can take algebra or geometry and learn some stuff, but I tell my students I’m going to teach you things you’ll actually be using. It’s survival.” The lessons learned through the LifeSmarts curriculum will be valuable throughout life; avoiding identity theft, learning how to deal with insurance policies, and renting your first apartment. But the relationships formed in LifeSmarts can also last a lifetime. “I’m proud to be a part of the first-ever LifeSmarts wedding,” says Johnson. “One of my former LifeSmarts kids is marrying a boy from Alabama, someone she met at the LifeSmarts national competition. I was invited to the wedding, and they told me they were going to have LifeSmarts questions on every table.” At this LifeSmarts event Johnson will have no need to assume her all-to-familiar competition position. Head held high, she will proudly welcome this new addition to her LifeSmarts family.

Meet the top ten scams – #3 fake prizes/sweepstakes/free gift scams – National Consumers League

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This is part three of our 10-part series taking a closer look at the top scams of 2012. The number three scam reported to NCL’s Fraud Center in 2012 was fake prizes, sweepstakes, and free gifts scams. To see an overview of our complete report on the top scams of the year, visit our Web site at nclnet.org. This year, the third most common type of scam reported to National Consumers League involved fake prizes, sweepstakes, and prizes.

These scams, which are may be advertised via phone calls, direct mail or email, generally claim that a consumer has won an a sweepstakes or other prize and must pay an upfront fee (such as fake “taxes” or “processing fee.”) The prize never materializes and the consumer lost the money spent on the “fees.” The widely reported “Jamaican Lottery Scam” is one of these types of frauds. However, this scam comes in many other variations, with scammers posing as representatives of well known sweepstakes such as Publishers Clearing House and Reader’s Digest. Consumers should look for the following red flags of possible fraud:

  • If you’re asking to pay money in order to collect winnings from a sweepstakes, lottery or other prize offering, it’s a scam
  • If you are told that you’ve won a lottery or contest you’ve never entered, it’s a scam
  • If you’re asked to wire money in order to collect winnings, it’s a scam
  • The “promoter” asks for sensitive personal information such as a credit or debit card number, Social Security Number or bank account number
  • The advertisement states that a purchase is necessary to win
  • The “promoter” guarantees that you will win if you send funds

Consumers who have responded to an advertisement for one of these fraudulent lotteries or sweepstakes or who have sent money to the scammer should expect that they will be contacted by the scammer and the scammer’s accomplices frequently with additional demands. Scammers engaged in fraudulent sweepstakes schemes have been known to use threats to extract more money from their victims or even impersonate law enforcement (and ask for additional money to set up “stings” against the scammers). Additional information on these scams is available here.

Signs of progress improving worker safety in Bangladesh – National Consumers League

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By Monique St. Jarre, Child Labor Policy Intern
Monique St. Jarre, is a child labor policy intern at NCL and the Child Labor Coalition and is a rising junior at Hamilton College pursuing a degree in world politics and economics. Monique is interested in human rights and international development issues. She is on the varsity Hamilton softball team and will be traveling to South Africa for the fall semester.

In the wake of the Rana Plaza factory collapse in Bangladesh in late April, the world has responded with outrage and passion. Though it has been compared to the infamous 1911 New York City Triangle Shirtwaist Factory Fire, the Rana Plaza collapse has a death toll almost eight times greater than the Triangle Shirtwaist Factory Fire, and is—by far— the worst factory disaster in world history. In response to the tragedy, recent activity in Washington, D.C. has shown public support for improved worker safety, despite the difficulties of bringing it about. The popular, politically-minded cafe Busboys and Poets invited Sonia Mistry and Timothy Ryan from the Solidarity Center, to give a presentation entitled: “After Rana Plaza: Global Perspectives on Workers’ Rights” earlier this summer. The Solidarity Center, an AFL-CIO affiliate, works closely with burgeoning labor groups around the world; it also a member of the Child Labor Coalition, which is co-chaired by the National Consumers League (NCL),  Mistry and Ryan’s talk was a part of the  Bread & Roses labor speaker series that strives to make the public more aware of pressing labor issues. Mistry first laid down the facts :  4 million Bangladeshi workers are in the garment industry, which accrues $19 billion a year in revenue. Since November, Mistry said, there had been 44 factory fires in Bangladesh, on top of the more than 1,129 victims from the Rana collapse.  The building was clearly unsafe, and the owner sent the workers back into the building because he feared lost profits, said Mistry. Doors were locked, fire escapes were lacking, and fire and safety equipment was missing. What is the main lesson to draw from this disaster? It was preventable, and should never be allowed to happen again, said Mistry and Ryan, who argued that a key to avoiding such tragedies is establishing vibrant labor unions which are often able to work to mitigate unsafe factory conditions. Mistry and Ryan also urged global clothing companies to sign on to the comprehensive Bangladesh factory safety accord that has been embraced by many European companies, while being eschewed by most American retailers. In early June, the US Senate Committee on Foreign Relations held a hearing to discuss what governments and companies might do to prevent more Rana disasters. Despite widespread public concern about factory safety reform, American retailers seemedless committed to making the significant safety changes embraced by European retailers. Arguments for the companies’ foot-draggingwere built on issues of legality and cost:It would be too risky and too expensive to make Bangladesh’s factories safe,and that American consumers did not want bear those costs in higher prices for clothes, suggested the retailers But are the companies right? Do Consumers care enough about factory safety to demand that factories be made safe? At the NCL, we launched the 10 cents pledge campaign to help answer those questions.  Based on financial data provided by the Workers Rights Consortium, NCL calculated that a mere 10 cents on every garment piece would generate enough money—the over $3 billion needed—to make Bangladeshi factories safe over a five-year period. Our campaign has brought media attention to factory safety and raised consumer awareness about the real costs of safety improvements, which are more viable than the companies want us to believe. Since the Ryan-Mistry presentation and the congressional hearing, a concerned Obama administration has jumped into the issue and removed GSP trade benefit status for Bangladesh. The AFL-CIO, who filed this petition in 2007, applauded this announcement while the Bangladesh government fully protested its economic implications.  Many American lawmakers and advocacy groups, however, are confident that it will serve as a strong symbol of American commitment to the idea that workers should be protected. Once the Bangladesh government takes the necessary actions and safety improvements are visible, trade benefit status will be reconsidered. Unfortunately, after saying “no” the European-retailer plan, American companies led by Walmart and the Gap have signed on to their own factory safety plan, labeled a “sham” by many groups, including the Interfaith Center on Corporate Responsibility. This “Worker Safety Initiative” has little legal liability and seemingly no safeguards against lack of payment or commitment by the signatories. It also creates the issue of having different safety rules for different companies who often use the same factory.  American companies need to step up to the plate and sign the better accord widely embraced by European companies. You can sign a petition telling them to do just that by clicking here. It is crucial that consumers continue to be educated about these issues, and express their concerns about worker safety to Congress and the corporate world. Please consider signing NCL’s10cents campaign pledge by clicking here. We must not allow time to fog our memories of this terrible tragedy.

The Fair Labor Standards Act turns 75 – National Consumers League

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Since FDR signed the Fair Labor Standards Act in 1938 great strides have been made in protecting worker’s rights. At that time, the act covered only about one fifth of the labor force. The FLSA banned oppressive child labor, set a minimum hourly wage of 25 cents, and defined a maximum work week of 44 hours. Economists believe that raising the minimum wage could help pull millions Americans out of poverty and could potentially generate over $60 billion in consumer spending. The federal minimum wage has not been increased since 2009, and the tipped minimum wage has not been raised since 1991. The Fair Minimum Wage Act of 2013 proposes to raise the minimum wage to $10.10 an hour. One study found that this increase would push more than half of the working poor out of poverty.

Meet the top ten scams – #2 Internet merchandise sales scams – National Consumers League

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This is part two of our 10-part series taking a closer look at the top scams of 2012. The number two scam reported to NCL’s Fraud Center in 2012 was Internet merchandise sales scams. To see an overview of our complete report on the top scams of the year, visit our Web site at nclnet.org.

The second most common type of scam reported to the National Consumers League this year were general merchandise sales – online sales in which purchased goods are misrepresented or are never delivered. These scams come in many different forms. One of the most commonly-reported types of Internet merchandise scams involved fake pharmaceuticals, such as diet pills and male-enhancement pills. Other popular variations on this scam involve fraudsters creating realistic-looking e-commerce sites advertising discounts on high-dollar merchandise such as jewelry or electronics. While these scams are difficult to stop, consumers should take some of the following precautions to avoid this theft:

  • Obtain a physical addresses and a phone number for the company or person you are buying from. Call the number to ensure it is legitimate.
  • Be skeptical of extremely low prices compared to other sites selling similar goods.
  • Pay with credit cards when buying something online since fraudulent purchases can be disputed with your card issuer. Remember to promptly report suspicious activity on your credit card bill since there is a limited window of time to dispute a charge.
  • Do not give out sensitive information such as a Social Security number or a debit card a PIN number when purchasing merchandise online.
  • Keep records of sales by printing out receipts or saving them on your computer.

For more information on general merchandise sales scams, visit Fraud.org.