A Wedding in Intensive Care
By HAIDER JAVED WARRAICH
BOSTON — There wasn’t going to be a happy ending. The patient had metastatic cancer and had just gone through her third unsuccessful regimen of chemotherapy. Now it seemed that everywhere we looked, we found disease. An X-ray of her belly revealed an obstruction in her intestines. A CT scan of her chest uncovered a pulmonary embolism. Her labs demonstrated that she had almost no white blood cells left with which to defend herself.
When she arrived in the intensive care unit, she was delirious. I asked her the usual questions, about her medical history, and whether she wanted us to do CPR if her heart were to stop beating, but she didn’t answer. I was just setting the clipboard aside when she raised a hand and told me, in a moment of lucidity: “Doc, do everything you can. I need to make it to my daughter’s wedding.”
She was in a lot of pain. She had a tube down her nose draining her stomach.
“When is the wedding?” I asked.
“Next summer.”
I blinked. I blinked again. She didn’t — she was looking right at me. At this point, I doubted she’d make it through the hospitalization, let alone eight more months. I didn’t know what I could say. I put the stethoscope against her chest and retreated into silence.
I met Stefanie, her daughter, the next morning. She was 24, but was only 8 when her mother’s cancer was first diagnosed. Stefanie’s mother had Muir-Torre syndrome, a condition that gave her a predisposition for malignancies. So Stefanie had shared her home with cancer for many years, and had always seen her mother fight.
But she knew that this time was different. The oncology fellow who had been treating her mother as an outpatient was the one to tell her that her mother was dying. Stefanie broke down, but understood there was no use denying it. The dream of a family wedding under the summer sun turned sour.
Stefanie called her fiancé that morning. Crying, she told him the news. But he flipped the fatalistic script. Without hesitation he told her, “I want her to be there, too,” and he proposed not only to have the wedding done sooner, but to have it done right there in the I.C.U.
Our team was used to dealing with all kinds of crises: Handling a last-minute wedding was not one of them. While having more than one opinion on a medical team regarding how best to manage a patient is fairly routine, we received no push back from anyone as we started to make arrangements for the wedding. Soon the whole medical team was involved. We sent a letter to the court to expedite the marriage certificate. A pastor and harp player were booked. The hospital cafeteria baked a chocolate cake, and the nurses brought in flowers. In just a few days, we were ready.
Insurance Chief Suggests Adding A New, Lower Level Of Health Plan
Rather than letting people keep their old health plans that don't comply with the new requirements of the Affordable Care Act, the head of the group that represents the nation's health insurance companies is floating an alternative: weakening the requirements.
"If you take 10 categories of coverage," said Karen Ignagni, president and CEO of America's Health Insurance Plans, in an interview taped for C-SPAN's Newsmakers, "no matter how meritorious each and every one of those benefits may be ... you have a giant step up" from what many people had before, and wanted to pay for.
Those 10 categories make up the "essential benefits" that nearly every plan now must cover to be considered compliant with the law.
Ignagni said forcing people to move from plans with lower premiums and fewer benefits to higher premiums and higher benefits was "a bridge too far for some individuals" and resulted in the decision by the Obama administration to allow people to keep their old plans for longer than the insurance industry would like. That's because insurers set their premiums for this year assuming those people would join the new risk pools. Allowed to keep their old plans, those presumably healthier people remain outside the new program.
As one possible alternative, Ignagni said she would create a "lower tier" of coverage.
"So that people could gradually get into the program; so they could be part of the risk pool," she said. "So we don't hold the healthier people outside; so the process could be working the way it was designed."
Currently, all four metal tiers of coverage — bronze, silver, gold and platinum — must offer all the essential benefits, but with different levels of cost-sharing. There is already a"catastrophic" option for those under 30 and certain others who can demonstrate financial hardship, but so far it hasn't proved particularly popular. According to the latest data from the federal government, only 1 percent of those selecting a plan in the 36 states where the federal government is operating the exchange have chosen a catastrophic plan.
Ignagni's proposal would presumably fall somewhere between the catastrophic plan and the bronze level of coverage. And she insists it would not draw most people into the cheapest plans.
"We're not seeing that right now," she said. "I think by that hypothesis you would have expected an extraordinary amount of people to buy bronze, and they've chosen more silver."
Indeed, 67 percent of those in the federal marketplaces have chosen silver-level plans so far, but some have suggested that may be in part because silver-level plans have subsidies for cost-sharing — in addition to the premium subsidies that are available for all the metal tiers.
Health Care Caricature
Republican leaders are making preposterous assertions that President Obama has abandoned a centerpiece of his health care reforms — the requirement that most people obtain comprehensive insurance or pay a penalty. In a cartoonish misrepresentation of how so-called hardship exemptions will be determined, the leaders, egged on by their allies in the conservative media, contend that recent steps by the administration undermine the individual mandate by giving virtually everyone who wants one a free pass to escape the penalty.
These steps are modest midcourse corrections to deal with individual problems in the rollout of a large and complex program. As long as the state and federal officials in charge proceed judiciously, the public will benefit.
The Republicans note, correctly, that some people may qualify for an exemption if their insurance was canceled and they can’t find affordable plans in the insurance marketplaces. But it’s not enough for applicants to simply say they cannot find an affordable policy; getting an exemption requires them to jump through all sorts of hoops.
Besides submitting a copy of the cancellation notice, applicants must fill out a nine-page form, under penalty of perjury, that requires information for everyone in the family about income, employment and any job-related health insurance. In addition, there is no certainty that an application will be approved. That judgment will be made by the federal and state officials who run the marketplaces. We hope and expect that they will award exemptions judiciously, rejecting applicants who make willful efforts to evade the law and approving those who made good faith efforts to find affordable policies.
Republicans also point to a catchall category that says that people may be eligible for an exemption if they “experienced another hardship in obtaining health insurance,” such as, perhaps, difficulty completing enrollment through balky websites. They must submit documentation “if possible.” But applicants who fail to document their case will only weaken their chances of getting an exemption. As always, exchange officials will make the final judgment and, we assume, reject specious claims.
Finally, Republicans point to a political maneuver by the administration that allowed insurers to renew existing policies for another two years, a move clearly designed to reduce the likelihood of consumer gripes just before the midterm elections. But renewal is not a sure thing. Insurers may not want to renew the old plans, and state insurance commissioners may not allow them to. In November, when the administration told insurers they could choose to reinstate canceled policies for a year, 21 states and the District of Columbia refused to allow it.
Living With Cancer: The Cost of Trials
By SUSAN GUBAR
A recent CT scan made me realize that the clinical trial extending my life effectively excludes all but the most privileged cancer patients.
I used to weasel out of scans. Chalk it up to trepidation about radiation and possible kidney damage, along with paranoid suspicions that such scans don’t yield definitive pictures. My oncologist and I had agreed to fudge on frequent testing. But the clinical trial did not.
When I registered for the CT, a woman wearing a badge that read “financial navigator” handed me the requisite forms to sign. I explained that the CT should be billed to the Phase I trial, since I was undergoing it so the investigators could measure the efficacy of their drug. Unable to reach the trial administrator by phone, she asked, “Can we put it down as a self-pay since you can change it afterwards?”
The clock was ticking. I would need to start drinking the gallons of what I call Kool-Aid, the drink that people under 140 pounds need to gulp during the two hours before an abdominal CT. I knew that I had to concede but wanted to know how much it would cost. “Oh,” she replied, “I couldn’t say.”
I signed the form and, after receiving the paper bracelet, trudged down to the basement and began the long haul of swilling and waiting. The Kool-Aid — in science-speak, the gastrografin contrast solution — brought to mind my friend Judy, vomiting the barium milkshake she had to ingest in a different hospital. It was impossible to keep down, she reported, but her oncologist insisted on it. I touted the less viscous Kool-Aid and she asked a hospital radiologist who replied, “Sure, you could try that instead.” We shook our heads in disbelief at his nonchalance.
Running repeatedly to the bathroom, I thanked my lucky stars that I did not need to take the drugs prescribed for people with allergic reactions to this test. The CT would be brief and painless, I knew, and therefore none of the anxiety of the first few scans plagued me as the technician accompanied me down the hall to the scanner.
“I can’t tell when I can get a nurse to access your port,” she said, positioning me on the narrow plank facing the gaping mouth of the huge machine. “There were massive cutbacks two months ago. Would you rather wait or have me stick you?”
At least I was fully clothed while making this decision. Praying a vein would work, I eyed the triangular bar hanging from a pulley over my head while the technician established a line and took cover in another room.
The conveyor belt moved me so deep into the bowels of the cave-like mechanism that the overhead metal bar, which I clutched with upraised hands, clanged against it. Only my head remained just outside of the giant doughnut.
“Take a breath and hold,” a mechanical female voice said. Did they change it to a male voice for men? I wondered.
Conveyed back out, I heard, “Breathe.”
Through the IV line, the technician injected another contrast agent that, she told me, would give me an awful taste in my mouth and make me feel as if I were wetting my pants, and then the process was repeated.
“Take a breath and hold.”
“Breathe.”
After the technician removed the needle in my arm, I limped out of the hospital determined to control my nausea with peppermint. Although I had not eaten for some 20 hours, I asked my husband to stop the car on the way home only to use a gas station restroom.
The nausea I had felt that day returned some time later when I received a bill for $4,567. Because standard practice of care for recurrent ovarian cancer includes a CT every three months, the trial did not cover the cost of this scan. At registration, I had been thinking in terms of the trial paying or me paying. Instead of saying “self-pay,” I should have handed the “financial navigator” my insurance cards. Adjustments would have to be made with billing services.
My mistake at registration revealed the exorbitant price of the CT, which otherwise would have been masked by the incomprehensible maze of paperwork sent by providers. The trial exacts large expenses: it requires that people have periodic scans and does not pay for them.
How could patients who are under-insured or not insured at all be included in such a clinical trial? How could people working for the minimum wage afford $18,268 a year for CTs? If the trial were in a remote hospital, travel and lodging would raise that price tag, as would the need to take days off from work for recurrent blood tests.
Now I understand why low-income patients are underrepresented in cancer trials, although they bear a disproportionate burden of cancer mortality. For economic status is of course a barrier not only to trials but also, more alarmingly, to detection and treatment.
I made the call to billing services. I took a breath and got put on hold.
http://well.blogs.nytimes.com/2014/03/20/living-with-cancer-the-cost-of-trials/
Lawmakers Attack Cost of New Hepatitis Drug
A new drug to treat hepatitis C that costs $1,000 a pill has caused rising concern among insurers and stateMedicaid programs. It has now also spurred interest from Democratic congressmen whose queries about the drug prompted a sell-off in biotechnology stocks on Friday.
Three Democratic members of the House Energy and Commerce Committee have demanded that Gilead Sciences, the developer, justify the price of its drug, which is called Sovaldi.
“Our concern is that a treatment will not cure patients if they cannot afford it,” the congressmen said in their letter, which was sent on Thursday.
It was signed by Henry A. Waxman of California, the ranking Democrat on the committee, and Frank Pallone Jr. of New Jersey and Diana DeGette of Colorado.
Gilead’s stock fell 4.6 percent, to $72.07 on Friday. Nervous investors took down the shares of some other big biotechnology companies as well, worried that pressure on drug prices would increase. Biogen Idec and Alexion Pharmaceuticals both fell 8 percent, Vertex Pharmaceuticals 5 percent and Celgene nearly 4 percent.
“The fear that Congress may begin a program of meddling, one drug at a time, doesn’t affect just one drug,” said Andrew A. Bogan of Bogan Associates, which invests in science and technology stocks. “It kind of scares everyone.”
Still, many analysts who follow Gilead predicted that the storm would soon pass. They noted that the letter writers were in the minority party in the Republican-controlled House.
“We just look at this letter as a little bit of noise,” said Robyn Karnauskas, a biotechnology analyst at Deutsche Bank.
Gregg Alton, executive vice president for corporate and medical affairs at Gilead, said on Friday that the company would gladly meet with Congress.
“We think the price is fair,” he said in an interview. “It will save the system money long term.”
How Much Should Hepatitis C Treatment Cost?
Premiums Rise for Long-Term Care Insurance. Keep It or Drop It?
Obama’s political malpractice
By Ruth Marcus,
The promise and the apology are the bookends of effective politics. President Obama has, tragically and perhaps irreparably, flubbed both.
Overpromising is every politician’s temptation, every journalist’s gotcha, every political opponent’s handy club. A chicken in every pot. Read my lips. On the campaign trail, nuance is an unwelcome intruder.
Still, all political promises are not created equal. Most are campaign detritus, easily made and just as quickly forgotten. Click on any fact-checking scorecard of Obama promises: End no-bid contracts over $25,000? Seek to negotiate a political agreement on Cyprus? Support a tax deduction for artists? Who knew? Who remembers?
Likewise, all political promise-breaking is not equally devastating. Cynical voters assume, even accept, a certain level of calculated, built-in betrayal.
One category of breakable political promise is the aspirational, high-toned pledge. You can promise and fail to be a uniter, not a divider , or to change the tone in Washington without voters dinging you for attempting the impossible.
Another category of breakable promise is the one the politician demonstrably tried but failed to keep, for reasons outside his control. For Obama, the classic of this genre is the pledge to close the prison at Guantanamo Bay, Cuba, stymied by congressional refusal to let him transfer detainees to American soil.
The promise you can’t break without suffering significant political damage is one that is central to your platform and within your capacity to deliver.
Such as, “If you like your insurance plan, you will keep it.” This repeated promise was foolhardy on its face. You can’t renovate the kitchen without suffering some disruption. Same for health care.
Indeed, the now-famous grandfather clause, allowing insurers to continue to offer substandard plans that were in place as of March 2010, was a conscious effort to alleviate such disruption. Some Obama advisers argued against the grandfather clause because they thought everyone should be in the new exchanges; the president, acutely conscious of his promise, wanted existing plans protected.
But given the churning nature of the individual market — most people don’t keep coverage for long — this protection was inherently limited and destined to evaporate.
That the administration knew this and failed to anticipate the inevitable outcry is political malpractice of the highest order. That policyholders who received cancellation notices didn’t have a functional Web site on which to seek alternatives makes that preexisting condition exponentially worse.
Which brings us to the art of the political apology. As with the spousal apology, the longer you wait, the worse it is. Obama’s first fault was in chiding people for misunderstanding him: “What we said was you could keep it if it hasn’t changed since the law was passed.”
His second misstep was resorting to the politician’s favorite dodge: the non-apology apology, conditional and passive. I’m sorry if anyone was offended. Mistakes were made. “I am sorry that they, you know, are finding themselves in this situation based on assurances they got from me,” Obama told NBC’s Chuck Todd. What does that even mean?
California pitches Obamacare at CVS, Ralphs as deadline nears
By Chad Terhune6:31 PM PDT, March 21, 2014
| advertisement |
Milk, bread and Obamacare.
Ahead of the March 31 enrollment deadline, the Covered California exchange said Friday that it reached a deal with pharmacy giant CVS Caremark Corp. and the Ralphs grocery chain to promote the healthcare law inside their stores.
The state said it will have health insurance information displays at the front of CVS stores. At Ralphs supermarkets, shoppers can get brochures and other information, hear in-store announcements and see messages on their receipts about health coverage.
Larry Hicks, an exchange spokesman, said the retailers are providing the display space at no cost to the state. He said the exposure is valuable even if it's coming so late in the six-month enrollment period.
"It’s better late than never," Hicks said. "There will be thousands of people viewing these displays, and that may be the tipping point for inspiring them to enroll for health insurance in the closing days."
CVS has been promoting the Affordable Care Act at its stores nationwide since enrollment began in October. In California, the exchange said CVS will provide additional information in 120 stores in areas with the highest concentration of residents who are eligible for federal premium subsidies.
Covered California said all 88 Ralphs stores in the state are participating in the retail partnership. Ralphs is a unit of grocery chain Kroger Co.
Last year, the state exchange dropped plans to partner with Wal-Mart Stores Inc. on promotion and enrollment after labor unions and consumer advocates protested the idea. Some critics fault Wal-Mart for its worker benefits, while the company says they exceed what the industry generally offers.
Overall, more than 1 million Californians have signed up for health insurance through the state exchange as of mid-March.
Through the end of February, more than 240,000 people in Los Angeles County had picked a health plan.
Will health care law make career change a valid option?
The link between insurance and a full-time job is broken, but ‘freedom’ remains a gamble.
By Carla K. Johnson
The Associated Press
The Associated Press
CHICAGO — For uninsured people, the nation’s new health care law may offer an escape from worry about unexpected, astronomical medical bills. But for Stephanie Payne of St. Louis, who already had good insurance, the law could offer another kind of escape: the chance to quit her job.
At 62, Payne has worked for three decades as a nurse, most recently traveling house to house caring for 30 elderly and disabled patients. But she’s ready to leave that behind, including the job-based health benefits, to move to Oregon and promote her self-published book. She envisions herself blogging, doing radio interviews and speaking to seniors groups.
“I want the freedom to fit that into my day without squeezing it into my day,” she said.
One of the selling points of the new health care plan, which has a March 31 enrollment deadline, is that it breaks the link between affordable health insurance and having a job with benefits. Payne believes she’ll be able to replace her current coverage with a $400- to $500-a-month plan on Oregon’s version of the new insurance exchange system set up under the law.
Federal experts believe the new insurance option will be a powerful temptation for a lot of job-weary workers ready to bail out. Last month, congressional budget analysts estimated that within 10 years, the equivalent of 2.5 million full-time workers could be working less because of the expanded coverage.
But is the new option a gamble? That’s a matter of debate, not only among the politicians who are still arguing furiously over the law’s merits, but among economists and industry experts.
| HealthCare.gov Sign-up Process Especially Daunting for Immigrant Populations | |||||||||||||||||||||||
03/21/2014 Reported By: Patty B. Wight
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