In one of the earlier blog posts, I wrote about how Graham Baldwin, a 49-year-old environmental building and development inspector in Maryland, kept working despite his pain and his battle with head and neck cancer.
He goes to work. The pain intensifies. He goes to work. It gets worse. He works more.
And wins an award? Yes. Baldwin was recently named an award winner for his work. I’ve seen the award, the “highest award, distinguished service” from the county where he is employed.
Despite his illness, sources say he is well-respected by his peers and also is tough-as-nails when necessary to ensure the job gets done. He doesn’t like the idea people around him get a hint of his sickness, the awful feeling of weakness, the bleeding, and nausea. He works odd hours to get the job done, or not be seen as much.
Baldwin’s illness is rare. Head and neck cancers account for about only 3 percent of all cancers in the U.S. These cancers are nearly twice as common among men as they are among women.
And Baldwin is a rare guy: How many people who are wracked with pain also rack up awards – for their continued hard work? Defying the odds, Graham Baldwin has been battling cancer for several years and seeing the costs of care skyrocket. (See related story on this page, “Having a Rare 3 Percent of Cancers, Graham Baldwin Needs Your Help”).
In 2006, soon after his wife’s death, Graham was diagnosed with benign tumors in his head and throat. For the next several years, he was treated by an ENT and underwent 5 surgeries to remove tumors. Around 2011, he noticed a lump in his neck and then was diagnosed.
He keeps going to work, despite intense pain. It’s almost Un-American: According to the Journal of the American Medical Association, employers in the U.S. lose over $60 billion a year due to workers who are not meeting their full potential due to pain and pain-related issues.
Graham has been confronting a maze of bills and insurance issues for more than a decade, struggling to learn what procedures to get next, what surgeries may be delayed because of lack of money. Post-cancer treatment infections in his jaw have become more dangerous and now deadly, with every postponement of surgeries and treatments he desperately needs to go forward.
Yes. You read that correctly. Surgeries delayed because of the lack of payment.
It’s ironic, here we are in a political maelstrom over Obamacare, with Republicans intent on erasing it, and town halls filled with people saying they desperately need their insurance coverage, worried about pre-existing conditions, or wondering how young people in their families are going to be insured.
Amidst those fights, there are the real struggles, for someone like Graham, who has insurance but it’s not enough. Insurance. But not enough. A contradiction in terms, no? People like Graham seek and deserve a chance to keep fighting.
Even under the Affordable Care Act (Obamacare) – the idea being that there will be healthcare for millions more (and there has) – the struggle for adequate insurance payment for needy patients continues. In January 2016, the American Journal of Medicine blog noted a New York Times story that found “insurance often fails as a safety net.”
“Health plans often require hundreds or thousands of dollars in out-of-pocket payments, sums that can create a cascade of financial troubles,” especially for those living from paycheck to paycheck, Times writer Margot Sanger-Katz wrote.
Sanger-Katz came up with a solution, of sorts.
“Here is the surest way to enjoy the peace of mind that comes with having health insurance: Don’t get sick,” Sanger-Katz wrote.
For now, Graham Baldwin doesn’t have that luxury.
(Graham and his family have many friends, who are trying to raise money for his care at this crucial time. Graham established a gofundme page, which friends have supported.)
Many factors — some well-known, some not — have contributed to America being in the tailspin it is in today with the national epidemic of opioid and heroin abuse, says a top toxicology expert.
Over-treating pain. The explosive marketing of profit-surging pharmaceuticals. Uneven regulations.
And there are underlying reasons, too: physicians worrying about patient-satisfaction scores. And the elevation of pain as a “fifth vital sign.”
Everyone is talking about the misuse of the drugs, how we got off-kilter in trying to balance treatment of severe and chronic pain with powerful and addictive drugs, resulting in too many overdoses and deaths. There is much blame to go around.
“Well- meaning people, medical and non-medical, develop regulations and perverse incentives that have repercussions. We over aggressively treat pain as mandated and addiction increases,” Dye adds. “We change our prescribing habits, as mandated, and give fewer prescriptions for opioids, and addicts then turn to heroin.”
In a powerful webcast in November, Dye told the story of “Opioids: the Next Death Penalty,” about the evolving problems of opioid abuse, its overwhelming challenges, and hopes for the future. From the 1950s to today, she told how the “pendulum has swung” about the debate of how many opioids should be prescribed: that it was OK, not OK, and back and forth, until where we are now: definitely not OK. In between, there has been intense marketing, sales promotions, questionable governmental and physician practices relating to the dispensing of the drugs.
Who would think some insider-baseball designations, such as “patient satisfaction” scores and a term as a “fifth vital sign” would have an impact on opioid use, and possibly misuse? It appears they have. “All these things created a snowball effect,” Dye says.
Over the years, some patients, particularly those having potential addiction issues, demanded opioids, and physicians too often relented, she said. Dye knows first hand of patients asking for drugs. During a period she was working several shifts in the emergency department at a hospital in rural Ohio, many patients asked her for more opioids. Her answer to their requests – and sometimes demands – was “no.”
“I would take the time and talk to them, and tell them why I wasn’t going to give them the prescription,” Dye recalls. “Ninety-five percent of the time they stormed out angry,” she said.
Then, Dye checked with her physician colleagues, many who were prescribing the number of opioids patients sought. “I asked them, ‘what’s the deal?” Dye recalls of her conversations with fellow doctors. “Many of these physicians were overworked – working 12 to 14-hour shifts, working five days in a row in overcrowded emergency departments,” she said. For them, it “wasn’t practical for them to take the time and not give (the patients) the medication,” Dye says.
And there was something else: “They were getting part of their bonuses based on patient satisfaction scores,” she says.
Patient satisfaction scores could have an impact on funding for healthcare systems. The better the score, the more money they get. The patient satisfaction scores could be dependent on anything such as the bedside manner of the physician, and whether the patient would recommend the facility to someone else. It was then not unusual for a physician to relent on a demanding patient – even if they wanted more medications.
“Yes, healthcare is a business, but our customers, the patients, don’t always know what is best for them,” she says. “It is my belief that giving incentives for patient satisfaction encourages many problems – not only unnecessary prescriptions for pain medicine and antibiotics but for ordering unnecessary tests.”
When Dye refers to the “fifth vital sign,” she refers to emphasizing pain as significant as blood pressure, for instance, which has resulted in many repercussions, including over medication, experts say.
The “fifth vital sign” was initiated by the Joint Commission for its Pain Management Standards in 2001, according to.MedPage Today. It required that healthcare providers ask every patient about their pain, on the theory at the time that pain was undertreated, the online magazine said.
“We were told, physicians and nurses, we should consider the pain scale as important as if it was blood pressure or pulse,” Dye said. “If their level of pain was zero to 10 (10 being the worst pain of your life),” she indicated it was recommended that the patient should be medicated to reduce the pain. There was a problem, though: “It wasn’t long before we saw patients eating chips and talking on their cell phone and reporting pain levels of 10,” she says. “Pain is very subjective, it’s hard to determine, but this pain scale; I think few people ended up using it.”
Quite typically, the debate has raged over the pain scale, but not resolved – for years.
In 2007, a paper from the Journal of the American College of Surgeons said it all in its title: “Kindness kills: the negative impact of pain as the fifth vital sign.” The authors wrote: “The current emphasis on pain assessment as the fifth vital sign and the use of unscientific pain scales is causing serious injury and death from overmedication.”
In 1980, a pivotal moment that advanced opioids came, in part, as a result of an academic letter published in the New England Journal of Medicine, Dye says. “We conclude that despite widespread use of narcotic drugs in hospitals, the development of addiction is rare in medical patients with no history of addiction,” said the Jan. 10, 1980 piece in the New England Journal of Medicine.
“If you look at this letter, it says, ‘if the patient is not an addict, you are fine,’ and that may be a simplistic way of looking at it, but it really changed the way we looked at addiction,” she says. When I asked her further about it, Dye says: “The most important thing is that it was a letter to the editor about a study and not a formal peer-reviewed study. It does tell me that we really need to evaluate the literature before we change our beliefs and practices.”
During that period, “people were starting to treat pain more aggressively. Prescriptions for pain were much more easily attainable,” she says.
Then, there evolved the “pill mills” – when a physician’s office might be right next door to a pharmacy, and they were selling lots of opioid medications, Dye says. “Physicians were making lots of money just by patients requesting pain medication and filling out the prescriptions,” she says. For some patients desperate for the drugs, they didn’t care how far they had to go to obtain them. Dye recalls a patient who drove from rural Ohio to Florida for her supply of drugs.
The marketing of drugs was tied more to sales, and opioids were given a great boost, especially in 1995 when the FDA approved Oxycontin (oxycodone controlled-release formulation), Dye says. Eventually, advertisers tried to convince doctors to prescribe medications, “and drug reps would come to (doctor’s) offices trying to get them to prescribe,” she says. Before that, “physicians were concerned about addiction; it was difficult to get them to prescribe at all,” Dye adds.
“OxyContin would soon become a focal point of opioid abuse issues that would continue to escalate into the late 2000s and beyond,” the FDA noted.
The company reformulated OxyContin in recent years, making it far more difficult to abuse, but it is still reckoning with lawsuits stemming from “its earlier, oft-abused iteration,” according to Forbes.com
Through the ups-and-downs of opioid sales and marketing, there was another, far more personal failure in recognizing the needs of people who have taken or even abused the drugs.
“There is the failure of many medical and lay people to recognize that addiction is a disease,” Dye says. “Acceptance that addiction is a disease and not a moral failing and treating it like one should help make a dent in the problem. Treatment of addiction is key.”
As drug costs skyrocket and Obamacare seems on shaky ground following Donald Trump’s election as president, thousands of people are sometimes frantically seeking lower-priced medications as they figure out their healthcare needs.
Blink Health, based in New York City, is an on-line based drug and prescription service that is attracting thousands of new customers, who are buying medications about 50 percent lower than they usually spend, for drugs $10 or less. That’s happening while drug costs overall have roiled consumers, even sparking congressional probes.
Blink Health’s customers are realizing the cheaper prices as they purchase their medications through Blink’s website or app, both free, and then take their prescriptions to almost any pharmacy in the country to be filled. At the pharmacies, customers then show their “Blink Card,” which is a proof of purchase, and receive their medicine. No payment is made to the pharmacy.
“At Blink Health we have seen a huge uptick in consumer calls, thousands of calls since the election. Consumers are feeling the jitters about potentially losing their healthcare, and concerned about affording their medications next year,” said co-founder Matthew Chaiken in an interview with HealthDataBuzz. Chaiken’s brother, Geoffrey, is the other co-founder.
“Patients are wondering what their medications are going to cost next year and the years ahead, given the amount of uncertainty,” Matthew Chaiken added.
Blink Health offers savings for prices some 15,000 medications. Recently, Blink Health announced a deal with Eli Lilly to save people 40% on insulin, such as Humalog. It will be honored at 67,000 local pharmacies nationwide, the company said.
Of course, there are many variables in prices of drugs, which are set by pharmacy benefits managers, who work with drug makers and insurers. But the mere fact that Blink and some other enterprises are able to sell drugs much lower prices reflects the great variation of the business model. For now, Blink Health focuses on generic drugs, which represents about 80 percent of the prescriptions out there. Blink Health advises its customers to check the Blink Price for their medications and see if they can save money. By slashing the prices, they show how millions of people are grossly overpaying for these medications.
Geoff and Matt Chaiken
Not only are too many people spending too much money for their needed medications, others are simply avoiding the drugs altogether because of high costs, with potentially tragic consequences.
“I have patients tell me that they use (the prescriptions) beyond the expiration date to save money,” Dr. Jen Wolfe, PharmD, BCGP, a senior care pharmacist in Clarksburg, MD.
For instance, diabetic patients who need insulin have said they aren’t always taking the medicine they should. “I have seen people or have them tell me they skip doses or don’t take it all to save money,” Wolfe says. “This can result in dire health consequences, including hospitalizations, organ failure and even death.”
As far as Blink Health execs see it, the prospects are just about limitless, which says something about the nature of healthcare and pricing today. At least 70 million people are “either under-insured or not insured, and that includes about 30 million people who can’t pay insurance” and the 40 million “with very high co-pays or high deductibles,” Matthew Chaiken says. “These people are sometimes waking up every day, anxious about their prescription medications,” he adds.
Indeed, the numbers show the need for less expensive medications – and Blink Health says it is trying to fill the void. Blink Health is relying on volume and is getting plenty of business. Although it started with generics, it expects to get into the brand name market as well.
On its website, Blink Health notes: “No matter if you are insured, uninsured or something in between, we offer some of the lowest prices on over 15,000 medications. Think of it as the cure for high drug prices.”
Blink Health is getting lots of publicity and deservedly so. As the New York Times said in a profile of drug pricing, “The spotlight on drug prices could not come at a better time….” The Times reported that “ten of the country’s 15 most commonly prescribed drugs cost less than $10 on Blink Health, including generics of Lipitor, the cholesterol drug, and metformin, the diabetes drug.”
While there are others moving into the medication selling space online, Blink Health has a niche market:
““We don’t have direct competitors in the market today,” Matthew Chaiken emphasizes. “We are the only company that offers one price for each medicine. Most patients take multiple medications and the ability to offer one price is viable for everyone. That enables the patient to go to the most convenient place where they trust the pharmacist.”
Prior to Blink Health, there was “no single web site a patient could go to and look up the price of medication and know they can obtain that price at any pharmacy they went to,” Matthew Chaiken says. “We recognize the huge opportunity to bring transparency to the prescription drug marketplace which historically has been incredibly opaque.”
Matthew Chaiken says one of the problems is a “huge misconception in this country” among the public about drug pricing.
“Patients assume when they pay several hundred dollars per month for health insurance, or go to the pharmacy, they are getting the lowest possible price for their medications. And that’s not the case,” he says.
Wolfe, the Maryland pharmacist, agrees that the lack of knowledge about drug pricing is a tremendous pitfall of the system.
“I would have to say educating the consumer is the biggest obstacle,” she says of all who try to sell pharmaceuticals to patients. She puts Blink Health into that category. “The smartest people I know don’t understand or have any idea what their insurance plan sells,” Wolfe says. “They’ve got to really educate people to get them to sit down and really go over the nitty-gritty of what their benefits are, and exactly what they’re currently paying. Then the customer needs to see what they can save by getting the Blink price from their website or app.”
An educated consumer herself, of course, Wolfe has tapped into Blink for her own personal medications and saw 50 percent savings.
“I think Blink is a terrific company that genuinely wants to help people save money on their medications,” Wolfe says. “Blink knows who their customer is and understands them. They have great leadership and are able to make important cost savings deals with drug companies to save patients substantial money.”
Matthew Chaiken says he’s gratified by the reaction from some customers. He and his brother come from a long line of relatives who have an understanding of the needs of people who may be sick and want to get better. The brothers are the sons and grandsons of physicians.
The two boyish-looking brothers -Matthew and Geoffrey Chaiken – are effectively in medicine, too.
Hearing from people who have purchased prescriptions at a cheaper price “is just incredible,” Matthew Chaiken says.
A couple wrote to Blink Health telling the brothers they saved over $13,000 after enrolling for their medication. “They are foster parents and heart transplant patients,” Matthew Chaiken said, aglow. “It’s wild!”