Voices | Jan. 2-9

Roundup of reactions, rants and other random musings from you, our readers

Casino Fireworks
Watching fireworks pop off all across the city signaled the end of a decade…or did it? Some experts wonder. | Image: Visit Philadelphia

The SHOUT Out

Image: Voices-New Year

“This is one of those situations where no matter what side you’re on, you’re probably going to get into a bar fight.” 

— Geoff Chester, an official at the U.S. Naval Observatory, commenting on the great debate of whether or not a new decade will start – or end – with 2020. Some believe that ending on “9” isn’t the start of the new decade but ending on “0” is. 

Your turn:

You think 2020 marked the start of a new decade or the end of one? Whether you have an opinion or don’t give a shit, tell us anyway: voices@philadelphiaweekly.com 

The Mummers didn’t do much this year to change notions like this letter we received last week. | Image: Visit Philadelphia

This guy is REALLY over the Mummers

I’m writing this because I hate the Mummers Parade. It’s terrible. That garbage isn’t representative of the city, it just gives the city’s racists, poor white conservatives and union workers who live in DELCO a chance to come out and act a fool for one day. They wanna act like this parade is for everyone but it’s not. 

You wanna do a social experiment? 

Walk around Center City during the parade this year and count the camo wearing assholes and the housewives they beat cart their future wifebeating little brats out in the cold to celebrate a bunch of drunk people in blackface who wear suggestive racist and misogynist innuendo in the name of “performance art.” 

Starting off the year with this trash every year is hands down the worst of Philly. But it’s a moneymaker, so as a city we’ll allow it. No thanks, I’m good, and trust me so is 90 percent of the rest of Philadelphians. 

Zaire Prince | Overbrook

Teen violence: Too easy to blame parents

One writer thinks that the parents are responsible. They’re probably at work when these teens get off school and have no way of knowing what they’re doing.  Schools for teenagers should begin later so kids get enough sleep and can learn better – it’s been scientifically proven that their circadian rhythm changes to night people during those years.  

And if they start school later, then schools lasts longer, perhaps until 5 p.m. so there’s an increased chance that their parents are around when they finish school.  There’s no reason for schools to let out so early as there’s probably no family member home then to hold them accountable.

— Gloria Rohlfs | Philadelphia

Support suicide prevention services

Did you know, suicide is the second-leading cause of death for young people between 10 to 24 in the state of Pennsylvania? This growing epidemic only increases the need for services that provide free and easily accessed support. 

The National Suicide Prevention Lifeline is a free resource that is available 24 hours a day, seven days a week, for anyone who is in suicidal crisis or emotional distress. According to their site, “The Lifeline is comprised of a national network of over 150 local crisis centers, combining custom local care and resources with national standards and best practices.” Legislation was introduced months ago to assess the viability of creating a three-digit suicide prevention number, akin to 911. 

The proposal has taken another step toward realization. The US Federal Communications Commission has proposed that 988 link callers directly to the National Suicide Prevention Lifeline. In times of need, one may not be able to recall a 1-800 number.  The hope is that someone in distress will be able to remember a three-digit code more easily.  

Another excellent resource for suicide prevention and awareness is The Jason Foundation, Inc. (jasonfoundation.com). The Jason Foundation, Inc. is a nationally recognized leader in youth suicide prevention and awareness. They have been providing programs and resources to help identify and assist young people who may be struggling with thoughts of suicide for over 20 years. For those years, they have never charged any school, church, youth organization or community for any of their programs or materials. To find your local JFI office, go to: jasonfoundation.com/about-us/locations/.

Cory Watkins | Henderson, Tenn.

Congress: Check out-of-pocket health costs

More than 190 million Americans suffer from chronic diseases. For them, health-care reform isn’t a political football – it’s a matter of life and death. 

Unfortunately, both parties keep pushing reforms that won’t improve patients’ lives. One side is focused on making insurance coverage skinnier and cheaper; the other on having the government take over large segments of the health-care system, setting prices, and sacrificing innovation and consumer choice.  

Both of these approaches would make it harder for patients to get the care they need and burden our health-care system in the long run. To cut costs and help patients save billions, politicians ought to focus on making preventing and managing chronic diseases more accessible by addressing out-of-pocket costs.

Chronic diseases account for 90 percent of all U.S. health-care spending. Today, six in 10 Americans live with at least one chronic condition.  

People with chronic conditions face unreasonable out-of-pocket costs. On average, individuals with two or more chronic diseases spend five times more out-of-pocket than patients without any chronic conditions. People with three or more conditions pay 10 times more.   

These out-of-pocket burdens have grown as insurance has steadily shifted more costs onto patients. Because of such trends, average out-of-pocket spending has grown 58 percent over the past decade.  

Consider the growth of high-deductible health plans, which typically require patients to pay thousands of dollars out-of-pocket before coverage begins. 

This year, 30 percent of workers have a high deductible health plan compared to just 4 percent in 2006. For people living with chronic conditions, surging out-of-pocket costs often mean delaying or forgoing care altogether. 

A recent study showed that even women receiving a breast cancer diagnosis delayed treatment at every step – screening, testing, surgery, radiation, and therapy – when insured under a high deductible health plan.  

This harms patients and adds to overall costs. Medication non-adherence alone causes approximately 125,000 deaths and adds nearly $300 billion to America’s health-care bill annually. In fact, we spend more failing to optimize adherence and medication benefits than we do on drugs themselves. Reducing out-of-pocket costs would improve adherence – thus keeping people healthy, saving money and lives.

As Congress considers legislation to improve our health-care system, it is shortsighted to focus on just one silo of care in our continuum. 

Instead, policymakers should focus on ways to lower out-of-pocket costs for people living with chronic conditions. Improving access to high quality chronic disease care could save our nation $6.3 trillion in spending. 

Chronic diseases are the number one cause of death, disability and rising health-care spending in the United States. The only way to save lives and reduce costs is to invest in better treatment – and address out-of-pocket costs so treatment is accessible to the people who need it most.

Kenneth E. Thorpe is a professor of health policy at Emory University and chairman of the Partnership to Fight Chronic Disease.

— Kenneth E. Thorpe | Atlanta

ICER discriminates against people with rare diseases

FDA officials approved a record number of rare disease treatments last year. One groundbreaking medicine treats an inherited bone condition that causes intense pain and immobility. Another treats Fabry disease, a genetic condition that can lead to kidney failure or stroke.

Breakthroughs like these offer hope to 30 million Americans living with rare diseases. But there’s still a long way to go. Scientists estimate there are 7,000 rare diseases, each of which afflicts fewer than 200,000 people. The majority of these ailments – 95 percent – lack a single approved treatment.

Unfortunately, one prominent health-care nonprofit could undermine research into rare diseases.

The group, the Institute for Clinical and Economic Review (ICER), analyzes the “cost-effectiveness” of many new FDA-approved drugs, including treatments for rare diseases. Because it relies on flawed assumptions, ICER mostly concludes that rare disease treatments aren’t worth the price.

ICER hopes that health insurers will use its findings to decide which medicines to cover. If the group’s message – rare disease treatments aren’t worth it – wins the day, drug companies may well stop researching and developing rare disease treatments. And millions of Americans would lose access to life-changing therapies.

ICER analyzes drugs’ cost-effectiveness using a metric called a “quality adjusted life year.” A QALY quantifies the cost of providing a patient with 12 additional months of perfect health.

Imagine a healthy woman has an incurable – but dormant – genetic disease that will kill her almost instantly once it’s activated. If a treatment could delay activation by one year and it costs $30,000, then ICER would say the treatment costs $30,000 per QALY.

This metric effectively discriminates against the elderly, persons with chronic conditions and other [illnesses], and people living with disabilities. ICER’s position is that these individuals aren’t in perfect health to begin with. So, the group doesn’t count an additional 12 months of life expectancy as a full QALY.

For example, our hypothetical treatment for a genetic disease might still extend a 90-year-old infirm patient’s life by one year, but ICER might count the gain as only 0.5 QALY, due to the perceived lower quality of his/her life. As a result, that same $30,000 treatment would cost $60,000 on a QALY-adjusted basis – potentially blocking access and affordability for patients.

Rare disease drugs are expensive for a reason. It can take over a decade and $2.6 billion to bring a new medicine to patients. Few experimental compounds even make it out of the lab.

Pharmaceutical companies have to charge enough to earn back their development costs. For common conditions that affect millions of patients, companies might only need to charge a few dollars per pill to recoup their development costs.

By contrast, rare diseases affect just 200,000 people at most. So companies need to generate far more revenue per patient just to break even. Rare disease treatments also tend to be fragile, large-molecule drugs that require numerous manufacturing, shipping, and storage precautions — further inflating costs.

ICER largely disregards these differences. The group evaluates rare disease drugs using roughly the same cost-effectiveness thresholds it uses for traditional, mass market medicines. Given this rigged scale, it’s no wonder that rare disease treatments score poorly.

Scientists are developing more than 560 medicines to treat rare diseases. That research will likely come to a halt – causing patients to lose access to lifesaving drugs – if insurers fail to recognize the faults in ICER’s reasoning.

Randall Rutta is the former president and CEO of Easterseals

Randall Rutta | Washington, D.C.

Even though they exposed the credit card info of essentially ALL of Philadelphia, we’re still getting hoagies there because it’s just what you do. | Image: Visit Philadelphia

TWEETS OF THE WEEK

Just before the start of the New Year, Wawa, the unofficial extended family member of the Greater Philadelphia Region, announced a massive data breach that exposed the account numbers and credit card info of basically anyone living in 30-mile radius of Philadelphia. While it’s led to some worried folks, who know they spend way too much money on coffee and shorti Italian hoagies, it also led to some great fodder on Twitter. 

Here’s a sampling.