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	<title type="text">Jenny Gold, Kaiser Health News | Vox</title>
	<subtitle type="text">Our world has too much noise and too little context. Vox helps you understand what matters.</subtitle>

	<updated>2019-03-04T10:57:38+00:00</updated>

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		<entry>
			
			<author>
				<name>Jenny Gold, Kaiser Health News</name>
			</author>
			
			<author>
				<name>Sarah Kliff</name>
			</author>
			
			<title type="html"><![CDATA[A baby was treated with a nap and a bottle of formula. His parents received an $18,000 bill.]]></title>
			<link rel="alternate" type="text/html" href="https://www.vox.com/2018/6/28/17506232/emergency-room-bill-fees-health-insurance-baby" />
			<id>https://www.vox.com/2018/6/28/17506232/emergency-room-bill-fees-health-insurance-baby</id>
			<updated>2018-08-14T14:51:55-04:00</updated>
			<published>2018-07-20T11:03:40-04:00</published>
			<category scheme="https://www.vox.com" term="Features" /><category scheme="https://www.vox.com" term="Health Care" /><category scheme="https://www.vox.com" term="Policy" /><category scheme="https://www.vox.com" term="Politics" />
							<summary type="html"><![CDATA[Update: After this story was published on June 28, Zuckerberg San Francisco General Hospital agreed to waive the $15,666 trauma response fee charged for Park Jeong-whan&#8217;s visit to the hospital. In a letter, the hospital&#8217;s patient experience manager said the hospital did a clinical review and offered &#8220;a sincere apology for any distress the family [&#8230;]]]></summary>
			
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<img alt="" data-caption="Park Seong-jin, 39, wakes up his son Jeong-whan, 2, from a daytime nap in their home, in South Korea. | Jun Michael Park for Vox" data-portal-copyright="Jun Michael Park for Vox" data-has-syndication-rights="1" src="https://platform.vox.com/wp-content/uploads/sites/2/chorus/uploads/chorus_asset/file/11603325/JMP_201806_Jang_Family_Seoul_002.jpg?quality=90&#038;strip=all&#038;crop=0,0,100,100" />
	<figcaption>
	Park Seong-jin, 39, wakes up his son Jeong-whan, 2, from a daytime nap in their home, in South Korea. | Jun Michael Park for Vox	</figcaption>
</figure>
<p><em><strong>Update: </strong>After this story was published on June 28, Zuckerberg San Francisco General Hospital agreed to waive the $15,666 trauma response fee charged for Park Jeong-whan&rsquo;s visit to the hospital. In a letter, the hospital&rsquo;s patient experience manager said the hospital did a clinical review and offered &ldquo;a sincere apology for any distress the family experienced over this bill.&rdquo; Further, the hospital manager wrote that the case &ldquo;offered us an opportunity to review our system and consider changes.&rdquo;</em></p>

<p>On the first morning of Jang Yeo-im&rsquo;s vacation to San Francisco in 2016, her eight-month-old son Park Jeong-whan fell off the bed in the family&rsquo;s hotel room and hit his head.</p>

<p>There was no blood, but the baby was inconsolable. Jang and her husband worried he might have an injury they couldn&rsquo;t see, so they called 911, and an ambulance took the family &mdash; tourists from South Korea &mdash; to Zuckerberg San Francisco General Hospital.</p>

<p>The doctors at the hospital quickly determined that baby Jeong-whan was fine &mdash; just a little bruising on his nose and forehead. He took a short nap in his mother&rsquo;s arms, drank some infant formula, and was discharged a few hours later with a clean bill of health. The family continued their vacation, and the incident was quickly forgotten.</p>
<img src="https://platform.vox.com/wp-content/uploads/sites/2/chorus/uploads/chorus_asset/file/11604385/JMP_201806_Jang_Family_Seoul_013.jpg?quality=90&#038;strip=all&#038;crop=0,0,100,100" alt="" title="" data-has-syndication-rights="1" data-caption="A photo of Park Jeong-whan at Zuckerberg San Francisco General Hospital after his admission shows bruise marks on the forehead and nose from his fall. | Jun Michael Park for Vox" data-portal-copyright="Jun Michael Park for Vox" />
<p>Two years later, the bill finally arrived at their home: They owed the hospital $18,836 for the 3 hour and 22 minute visit, the bulk of which was for a mysterious fee for $15,666 labeled &ldquo;trauma activation,&rdquo; which sometimes is known as &ldquo;a trauma response fee.&rdquo;</p>

<p>&ldquo;It&rsquo;s a huge amount of money for my family,&rdquo; said Jang, whose family had travel insurance that would cover only $5,000. &ldquo;If my baby got special treatment, okay. That would be okay. But he didn&rsquo;t. So why should I have to pay the bill? They did nothing for my son.&rdquo;</p>

<p>American hospital bills today are littered with multiplying fees, many of which don&rsquo;t even exist in other countries: fees for blood draws, fees for checking the blood oxygen level with a skin probe, fees for putting on a cast, minute-by-minute fees for lying in the recovery room.&nbsp;&nbsp;</p>
<img src="https://platform.vox.com/wp-content/uploads/sites/2/chorus/uploads/chorus_asset/file/11604465/JMP_201806_Jang_Family_Seoul_005.jpg?quality=90&#038;strip=all&#038;crop=0,0,100,100" alt="" title="" data-has-syndication-rights="1" data-caption="Original medical certificate, final notice, and medical bill for $18,836 from Zuckerberg San Francisco General Hospital. | Jun Michael Park for Vox" data-portal-copyright="Jun Michael Park for Vox" />
<p>But perhaps the kingpins are the &ldquo;trauma fees,&rdquo; in part because they often run more than $10,000 and in part because they seem to be applied so arbitrarily.</p>

<p>A trauma fee is the price a trauma center charges when it activates and assembles a team of medical professionals that can meet a patient with potentially serious injuries in the ER. It is billed on top of the hospital&rsquo;s emergency room physician charge and procedures, equipment, and facility fees. &nbsp;</p>

<p>Emergency room bills collected by Vox and Kaiser Health News show that trauma fees are expensive &mdash; typically thousands of dollars &mdash; and vary widely from one hospital to another.</p>

<p>In the past six months, Vox has collected more than&nbsp;<a href="https://www.vox.com/2018/2/27/16936638/er-bills-emergency-room-hospital-fees-health-care-costs">1,400 emergency room&nbsp;</a>bills submitted by readers in all 50 states and Washington, DC, as part of an investigation into emergency room billing practices.</p>

<p>The dominant storyline to emerge is what anyone who has visited an emergency room might expect:&nbsp;<a href="https://www.vox.com/policy-and-politics/2017/10/16/16357790/health-care-prices-problem">Treatment is expensive</a>. Fees have&nbsp;<a href="https://www.vox.com/health-care/2017/12/4/16679686/emergency-room-facility-fee-monopolies">risen sharply</a>&nbsp;in the past decade. And when health insurance plans&nbsp;<a href="https://www.vox.com/policy-and-politics/2018/1/29/16906558/anthem-emergency-room-coverage-denials-inappropriate">don&rsquo;t pay</a>, patients are left with burdensome bills.</p>

<p>Charges ranged from $1,112.00 at a hospital in Missouri to $50,659.00 at a hospital in California, according to Medliminal, a company that helps insurers and employers around the country identify medical billing errors.</p>
<div class="wp-block-vox-media-highlight vox-media-highlight"><h2 class="wp-block-heading"><a href="http://bit.ly/er-bills">Help our reporting</a></h2><img src="https://platform.vox.com/wp-content/uploads/sites/2/chorus/uploads/chorus_asset/file/9688285/erfees_cover_alt.jpg?quality=90&#038;strip=all&#038;crop=0,0,100,100" alt="" title="" data-has-syndication-rights="1" data-caption="" data-portal-copyright="" />
<p>Hospitals keep ER fees secret. <a href="http://bit.ly/er-bills">Share your bill here</a> to help change that.</p>
</div>
<p>&ldquo;It&rsquo;s like the Wild West. Any trauma center can decide what their activation fee is,&rdquo; says Renee Hsia, director of health policy studies in the emergency medicine department at the University of California, San Francisco.</p>

<p>Hsia is also an emergency medicine doctor at Zuckerberg San Francisco General Hospital, but was not involved in the care of the patients discussed in the story &mdash; and spoke about the fees generally.</p>

<p>Comprehensive data from the Health Care Cost Institute shows that the average price that health insurers paid hospitals for trauma response (which is often lower than what the hospital charges) was $3,968 in 2016. But hospitals in the lowest 10 percent of prices received an average of $725 &mdash; while hospitals in the most expensive 10 percent were paid $13,525. Data from Amino Health, a health cost transparency company, shows the same trend. On average, Medicare pays just $957.50 for the fee.</p>

<p>According to Medicare guidelines, the fee can only be charged when the patient receives at least 30 minutes of critical care provided by a trauma team &mdash; but hospitals do not appear to be following that rule when billing non-Medicare patients.</p>

<p>At the turn of the century, such fees didn&rsquo;t even exist.</p>

<p>But today many insurers willingly pay them, albeit at negotiated rates, for hospitals in their networks. Six insurers and industry groups each declined to discuss the fees, and a spokesperson for America&rsquo;s Health Insurance Plans, the industry trade group, said, &ldquo;We have not seen any concerning trends surrounding trauma center fees.&rdquo;</p>
<img src="https://platform.vox.com/wp-content/uploads/sites/2/chorus/uploads/chorus_asset/file/11604491/JMP_201806_Jang_Family_Seoul_033.jpg?quality=90&#038;strip=all&#038;crop=0,0,100,100" alt="" title="" data-has-syndication-rights="1" data-caption="The Jang family near their apartment complex in Suwon, an hour south of Seoul, South Korea. | Jun Michael Park for Vox" data-portal-copyright="Jun Michael Park for Vox" />
<p>Trauma centers argue that these fees are necessary to train and maintain a full roster of trauma doctors, from surgeons to anesthesiologists, keeping them on-call and able to respond to medical emergencies at all times.</p>

<p>Zuckerberg San Francisco General Hospital spokesperson Brent Andrew defended the hospital&rsquo;s fee of over $15,000, even though Jeong-whan didn&rsquo;t require those services.</p>

<p>&ldquo;We are the trauma center for a very large, very densely populated area. We deal with so many traumas in this city &mdash; car accidents, mass shootings, multiple vehicle collisions,&rdquo; Andrew said. &ldquo;It&rsquo;s expensive to prepare for that.&rdquo;</p>
<h2 class="wp-block-heading">Patients face steep bills — and questionable charges — when trauma teams “activate”</h2>
<p>Experts who&rsquo;ve studied trauma fees say that there&rsquo;s little rationale behind how some hospitals calculate the charge and when the fee is billed. But, of course, those decisions have tremendous financial implications.</p>

<p>After Alexa Sulvetta, a 30-year-old nurse, broke her ankle rock climbing at a San Francisco gym this past January, she faced an out-of-pocket cost of $31,250.</p>

<p>An ambulance brought Sulvetta to San Francisco General Hospital, where, she recalled, &ldquo;my foot was twisted sideways. I had been given morphine in the ambulance.&rdquo;</p>

<p>Sulvetta was evaluated by an emergency medicine doctor and sent for emergency surgery. She was discharged the next day.</p>
<img src="https://platform.vox.com/wp-content/uploads/sites/2/chorus/uploads/chorus_asset/file/11604889/trauma_fees_2.jpg?quality=90&#038;strip=all&#038;crop=0,0,100,100" alt="" title="" data-has-syndication-rights="1" data-caption="Alexa Sulvetta and her husband, Ben Verley, at their home in Oakland, California. | Heidi de Marco/KHN" data-portal-copyright="Heidi de Marco/KHN" />
<p>The hospital charged Sulvetta a $15,666 trauma response fee, a hefty chunk of her $113,336 bill. Her insurance decided that the hospital fees for the one-day stay were too high, and &mdash; after negotiations &mdash; agreed to pay only a charge it deemed reasonable. The hospital then went after Sulvetta for $31,250. &nbsp;</p>

<p>&ldquo;My husband and I were starting to think about buying a house, but we keep putting that off because we might need to use our life savings to pay this bill,&rdquo; she said.</p>

<p>Andrew, the hospital spokesperson, said that the hospital is justified in pursuing the bill. &ldquo;It&rsquo;s fairly typical for us to pursue patients when there are unpaid balances,&rdquo; he said. &ldquo;This is not an uncommon thing.&rdquo;</p>
<h2 class="wp-block-heading">“I feel like I created a monster”</h2>
<p>Trauma response fees were first approved by the National Uniform Billing Committee in January 2002, following a push by a national trauma consulting firm. The high costs of staffing a trauma team available at all hours, the firm argued, threatened to shut down trauma centers across the country.</p>

<p>Trauma centers require special certification to provide emergency care for patients suffering very serious injuries above and beyond a regular emergency department.</p>

<p>&ldquo;We were keeping an ongoing list of trauma centers that were closing all over the country,&rdquo; said Connie Potter, who was executive director of the firm that succeeded in getting the fee approved. She now consults with hospital trauma centers on how to bill appropriately.</p>

<p>Trauma teams are activated by medics in the field, who radio the hospital to announce they are arriving with a trauma patient. The physician or nurse who receives the call then decides whether a full or partial trauma team is needed, which results in different fees. Potter says that person can also activate the trauma team based on the consultation with the EMTs. &nbsp;</p>

<p>But reports from the field are often fragmentary, and there is much discretion in when to alert the trauma team.</p>

<p>An alert means paging a wide range of medical staff to stand at the ready, which may include a trauma surgeon, who may not be in the hospital. &nbsp;</p>

<p>Potter said if the patient arrives and does not require at least 30 minutes of critical care, the trauma center is supposed to downgrade the fee to a regular emergency room visit and bill at a lower rate, but many do not do so.</p>

<p>Hospitals were supposed to come up with the fee for this service by looking at the actual costs of activating the trauma team, then dividing it over the amount that their patients are likely to pay. Hospitals that see a lot of uninsured and Medicaid patients might charge more to patients with private insurance to make up for possible losses.</p>

<p>But soon, Potter said, some hospitals began abusing the fee by charging an exorbitant amount that seemed to be based on the whims of executives rather than actual costs.</p>

<p>&ldquo;To a degree, I feel like I created a monster,&rdquo; Potter said. &ldquo;Some hospitals are turning this into a cash cow on the backs of patients.&rdquo;</p>

<p>The $15,666 Sulvetta was charged is San Francisco General&rsquo;s low-level trauma response fee. The high-level response fee in which the trauma surgeon is called into action is $30,206.&nbsp;The hospital would not provide a breakdown of how these fees are calculated.</p>

<p>Unfortunately, outside of Medicare and state hospitals, regulators have little sway over how much is charged. And at public hospitals such fees may be a way to balance government budgets. At San Francisco General Hospital, the $30,206 higher-level trauma response fee, which increased by about $2,000 last year, was approved by the San Francisco Board of Supervisors.</p>
<h2 class="wp-block-heading">An ibuprofen, two medical staples — and a $26,998 bill</h2>
<p>Some patients question whether their particular cases ought to include a trauma fee at all &mdash; and experts think they&rsquo;re right to do so.</p>

<p>Sam Hausen, 28, was charged a $22,550 trauma response fee for his visit to Queen of the Valley Medical Center in Napa, California, last January.</p>

<p>An ambulance brought him to the Level 3 trauma center after a minor motorcycle accident, when he took a turn too quickly and fell from his bike. Records show that he was alert with normal vital signs during the four-mile ambulance ride, and that the ambulance staff alerted the hospital that the incoming patient had traumatic injuries.</p>

<p>He was at the hospital for only about half an hour for a minor cut on his head, and he didn&rsquo;t even need X-rays, CAT scans, or a blood test. &ldquo;The only things I got were ibuprofen, two staples, and a saline injection. Those were the only services rendered. I was conscious and lucid for the whole thing,&rdquo; said Hausen.</p>
<img src="https://platform.vox.com/wp-content/uploads/sites/2/chorus/uploads/chorus_asset/file/11604917/trauma_fees_9.jpg?quality=90&#038;strip=all&#038;crop=0,0,100,100" alt="" title="" data-has-syndication-rights="1" data-caption="Sam Hausen was charged a $22,550 trauma response fee for his visit to Queen of the Valley  Medical Center in Napa, Calif., in January after a  motorcycle accident. | Heidi de Marco/KHN" data-portal-copyright="Heidi de Marco/KHN" />
<p>But because the ambulance medics called for a trauma team, the total for the visit came to $26,998 &mdash; and the vast majority of that was the $22,550 trauma response fee.</p>

<p>Queen of the Valley Medical Center defended the charge. &ldquo;Trauma team activation does not mean every patient will consult with and/or be cared for by a trauma surgeon,&rdquo; spokesperson Vanessa deGier said in an email. &ldquo;The activation engages a team of medical professionals. Which professional assesses and cares for a trauma patient depends on the needs and injury/illness of the patient.&rdquo;</p>

<p>Guidelines for trauma activation are written broadly on purpose to make sure they don&rsquo;t miss any emergencies that could otherwise kill patients, said Daniel Margulies, a trauma surgeon at Cedars-Sinai in Los Angeles and chair of the American College of Surgeons committee on trauma center verification and review. Internal injuries, for example, can be difficult to diagnose at the scene of an accident.</p>

<p>&ldquo;If you had someone who needed a trauma team and didn&rsquo;t get called, they could die,&rdquo; he said.&nbsp;</p>

<p>Medics err on the side of caution when calling in trauma patients to avoid missing a true emergency. To that end, the <a href="https://www.facs.org/~/media/files/quality%20programs/trauma/vrc%20resources/resources%20for%20optimal%20care.ashx">American College of Surgeons</a> says it is acceptable to &ldquo;overtriage,&rdquo; summoning the trauma team for the 25-35 percent of patients who don&rsquo;t end up needing it. &nbsp;</p>

<p>But that logic leaves patients like Jang, Sulvetta, and Hausen with tens of thousands in potential debt for care they didn&rsquo;t ask for or need, care that is ordered out of an abundance of caution &mdash; a call by an ambulance worker, a triage nurse, or a physician &mdash; based on scant information received over the phone.</p>

<p>Jeong-whan had fallen three feet from a hotel bed onto a carpeted floor when his nervous parents summoned an ambulance. By the time the EMTs arrived, Jeong-whan was &ldquo;crawling on the bed, not appearing to be in any distress,&rdquo; according to the ambulance records. The EMTs called San Francisco General Hospital and, after a consultation with a physician, transported Jeong-whan as a trauma patient, likely because of the baby&rsquo;s young age.</p>

<p>At the hospital, Jeong-whan was evaluated briefly by a triage nurse and sent to an emergency department resuscitation bay.</p>

<p>Jang recalls being greeted by nine or 10 providers at the hospital, but the baby&rsquo;s medical records from the visit do not mention a trauma team being present, according to Teresa Brown of Medliminal, who reviewed the case.</p>
<img src="https://platform.vox.com/wp-content/uploads/sites/2/chorus/uploads/chorus_asset/file/11604971/JMP_201806_Jang_Family_Seoul_014.jpg?quality=90&#038;strip=all&#038;crop=0,0,100,100" alt="" title="" data-has-syndication-rights="1" data-caption="Jeong-whan was discharged with a clean bill of health after staying at Zuckerberg San Francisco General Hospital for a couple of hours. Jang Yeo-im claims that he didn’t receive any medical treatment at the hospital and she put the Band-Aid on her son’s nose herself. | Jun Michael Park for Vox" data-portal-copyright="Jun Michael Park for Vox" />
<p>The baby appeared to have no signs of major injury, and no critical care was required. Five minutes later, the family was transferred to an exam room for observation before being released a few hours later. Brown says she would dispute the $15,666 trauma response fee because the family does not appear to have received 30 minutes of critical care from a trauma team.</p>

<p>Jang currently has a patient advocate working on her behalf to try to negotiate the bill with the hospital. She fears that the pending medical debt could prevent her from getting a visa to visit New York and Chicago, which she hopes to do in the next few years. &nbsp;</p>

<p>She said her experience with the US health care system and its fees has been shocking. &ldquo;I like the USA. There are many things to see when traveling,&rdquo; she said. &ldquo;But the health care system in USA was very bad.&rdquo;&nbsp;</p>
<img src="https://platform.vox.com/wp-content/uploads/sites/2/chorus/uploads/chorus_asset/file/11604991/JMP_201806_Jang_Family_Seoul_042.jpg?quality=90&#038;strip=all&#038;crop=0,0,100,100" alt="" title="" data-has-syndication-rights="1" data-caption="Jang Yeo-im plays with her son in their family’s bedroom. | Jun Michael Park for Vox" data-portal-copyright="Jun Michael Park for Vox" /><hr class="wp-block-separator" />
<p><em>This story was produced in collaboration with </em><a href="https://khn.org/news/how-er-bills-can-balloon-by-as-much-as-50k-for-trauma-response/"><em>Kaiser Health News</em></a><em>.</em></p>
<h2 class="wp-block-heading"><em><strong>Help us report on the costs to visit the emergency room. </strong></em><a href="http://bit.ly/er-bills"><em><strong>Share your bill here</strong></em></a><em><strong>.</strong></em></h2>
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			<entry>
			
			<author>
				<name>Jenny Gold, Kaiser Health News</name>
			</author>
			
			<title type="html"><![CDATA[How Theranos hid its sketchiness from reporters — and helped keep the puff pieces coming]]></title>
			<link rel="alternate" type="text/html" href="https://www.vox.com/first-person/2018/3/22/17151906/theranos-controversy-fraud-journalism-holmes-fire-alarm-blood" />
			<id>https://www.vox.com/first-person/2018/3/22/17151906/theranos-controversy-fraud-journalism-holmes-fire-alarm-blood</id>
			<updated>2018-03-22T16:02:14-04:00</updated>
			<published>2018-03-22T12:50:01-04:00</published>
			<category scheme="https://www.vox.com" term="Business &amp; Finance" /><category scheme="https://www.vox.com" term="Money" /><category scheme="https://www.vox.com" term="Politics" /><category scheme="https://www.vox.com" term="Science" />
							<summary type="html"><![CDATA[It was November 2014, and I was working on a feature story about a buzzed-about blood-testing company in Silicon Valley that promised to &#8220;disrupt&#8221; the lab industry with new technology. The company, Theranos, claimed its revolutionary finger-prick test would be a cheap and less painful way to screen for hundreds of diseases with just a [&#8230;]]]></summary>
			
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<img alt="" data-caption="Theranos CEO Elizabeth Holmes attends the 2016 Breakthrough Prize Ceremony in November 2015 in Mountain View, California. | Kimberly White/Getty Images" data-portal-copyright="Kimberly White/Getty Images" data-has-syndication-rights="1" src="https://platform.vox.com/wp-content/uploads/sites/2/chorus/uploads/chorus_asset/file/10475975/GettyImages_496363974.jpg?quality=90&#038;strip=all&#038;crop=0,0,100,100" />
	<figcaption>
	Theranos CEO Elizabeth Holmes attends the 2016 Breakthrough Prize Ceremony in November 2015 in Mountain View, California. | Kimberly White/Getty Images	</figcaption>
</figure>
<p>It was November 2014, and I was working on a feature story about a buzzed-about blood-testing company in Silicon Valley that promised to &ldquo;disrupt&rdquo; the lab industry with new technology. The company, Theranos, claimed its revolutionary finger-prick test would be a cheap and less painful way to screen for hundreds of diseases with just a few drops of blood.</p>

<p>Old-fashioned venous blood draws, where the patient watches as vial after vial of blood is collected, would quickly become obsolete, Theranos promised.</p>

<p>The interviews took a month to arrange. The public relations officer wanted to know, did I &ldquo;plan on sourcing other people?&rdquo; and implied that CEO Elizabeth Holmes might not be available to me if I did talk to other sources. I rejected that condition, but finally the company&rsquo;s public relations contacts agreed to let me visit its site at the Walgreens in Palo Alto, California &mdash; one of the first such setups in the country &mdash; followed by a sit-down interview with Holmes at her office.</p>

<p>I arrived at the Walgreens on the morning of November 4 and was met by two Theranos press representatives who would supervise my visit. I took out my recording equipment (the story was for NPR) and began approaching patients who were waiting in line to check in for testing.</p>

<p>Some didn&rsquo;t want to talk to a reporter, but others were open and gracious, sharing with me the reasons they had decided to give Theranos a try. One couple offered to let me come with them into the small testing room, set up to feel like a relaxing spa.</p>
<h2 class="wp-block-heading">Where were the famous finger-prick blood draws?</h2>
<p>A pattern quickly emerged &mdash; none of the patients I talked to that day could get a finger-prick test, as promised. Instead, they received a regular venous blood draw, the same as I&rsquo;d received on numerous occasions at my doctor&rsquo;s office, though the phlebotomist said the needle was slightly smaller.</p>

<p>I asked the phlebotomist: Was this standard? Did most patients get the venous draw? She told me they &ldquo;did more finger sticks than venous draws,&rdquo; but couldn&rsquo;t give me a number. One of the PR people approached me &mdash; I was not authorized to talk to the phlebotomist, he said &mdash; and asked me to erase the audio I had recorded. I declined.</p>

<p>I asked him: Why were none of the patients getting a finger prick? Just bad luck and timing, he said. This wasn&rsquo;t how it usually was, he promised. And wouldn&rsquo;t I just rather get a finger prick myself and report on the experience, as so many other journalists had agreed to do?</p>

<p>I said no. I needed an actual patient to make a compelling radio story. So I continued waiting for other patients.</p>

<p>Soon, the two Theranos representatives approached me again &mdash; with a third on the phone, who said she wanted to talk to me. They were getting complaints about my asking patients questions, she told me. The main Theranos office had gotten several calls from people who had been in the Walgreens that morning, she claimed, complaining that a reporter was bothering them.</p>

<p>I hadn&rsquo;t pressured anyone. The patients I&rsquo;d interviewed had all been perfectly friendly and willing. I&rsquo;ve also been a health reporter for 10 years and never have I been told I was pushing patients to do something that made them uncomfortable.</p>

<p>Something seemed very wrong.</p>

<p>Soon, one of the Theranos representatives approached me again, clearly nervous. They appeared worried. Unless I found a patient getting a finger prick, he said, they would likely have to cancel my interview with Holmes.</p>

<p>It was clearly a threat to try to steer me away from where the story was taking me: Theranos seemed to be doing very few, if any, of its revolutionary tests on actual patients. I asked the press representatives to get the other one on the phone again; I didn&rsquo;t like being threatened, and I wanted to hash it out with her.</p>
<h2 class="wp-block-heading">I kept pursuing the story; then something very strange happened</h2>
<p>Meanwhile, I sat down with another couple, who had driven 45 minutes to experience the vaunted finger prick. Would they too be steered to a traditional blood test?</p>

<p>As I was interviewing them &mdash; but before we knew which test they could get &mdash; a sudden and jolting BEEP BEEP BEEP reverberated through the drugstore. &ldquo;Fire alarm!&rdquo; someone called out, and we evacuated to the street.</p>

<p>I&rsquo;d never been in a drugstore when the fire alarm went off. There was no smoke and no fire.</p>

<p>I decided to cancel the feature. I had pitched it as a consumer-focused story about how often &ldquo;less is more&rdquo; in health care. I clearly no longer had that story. I made a few more calls to various experts on lab testing to try to figure out what was happening: Was Theranos for real? I was given an interview with a lawyer at Theranos, who promised me that &ldquo;significantly more than 50 percent of the tests are done with a finger prick,&rdquo; though she would say no more.</p>

<p>Now that Theranos has been implicated in massive fraud, that encounter serves as a reminder of the skepticism both journalists and health care consumers need to have in an age when public relations, marketing, and advertising try to guide the story and our treatment.</p>

<p>Theranos generated huge hype and laudatory coverage in places like <a href="https://www.newyorker.com/magazine/2014/12/15/blood-simpler">the New Yorker</a>, <a href="https://www.wired.com/2014/02/elizabeth-holmes-theranos/">Wired</a>, and <a href="http://fortune.com/2014/06/12/theranos-blood-holmes/">Fortune</a> by selling a compelling idea, even as its PR people couldn&rsquo;t show me an actual patient who had benefited. Sometimes, in health care, an idea that seems too good to be true, isn&rsquo;t. We all &mdash; patients and journalists &mdash; have to do our due diligence.</p>

<p>The PR tactics Theranos employed blocked journalists from providing the kind of scrutiny that might have revealed the fantasy the company was weaving for investors sooner.</p>

<p>And 11 months after my experience at that Walgreens, John Carreyrou of the Wall Street Journal published the&nbsp;<a href="https://www.wsj.com/articles/theranos-has-struggled-with-blood-tests-1444881901">first of his groundbreaking investigations</a>&nbsp;surrounding Theranos, blowing the lid off the company&rsquo;s fraudulent claims. Of the 240 types of blood tests the company said it did, only 15 used finger pricks.</p>

<p>Now comes the news that Theranos&nbsp;<a href="https://www.npr.org/sections/thetwo-way/2018/03/15/593809254/sec-charges-theranos-founder-elizabeth-holmes-with-elaborate-years-long-fraud">has accepted</a>&nbsp;a settlement in the fraud case with the Securities and Exchange Commission. Which has me thinking.</p>

<p>Had someone pulled the fire alarm? I&rsquo;ve been suspicious since the moment it happened.</p>

<p>Last week, I wrote to Theranos to ask. No surprise: No response.</p>

<p><em>This story was produced by&nbsp;</em><a href="http://khn.org/"><em>Kaiser Health News</em></a><em>, which publishes </em><a href="https://californiahealthline.org/"><em>California Healthline</em></a><em>, an editorially independent service of the California Health Care Foundation. Jenny Gold is a reporter for Kaiser Health News. Find her on Twitter </em><a href="http://twitter.com/JennyAGold"><em>@JennyAGold</em></a><em>.</em></p>
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<p><a href="http://www.vox.com/first-person"><strong>First Person</strong></a>&nbsp;is Vox&rsquo;s home for compelling, provocative narrative essays. Do you have a story to share? Read our&nbsp;<a href="http://www.vox.com/2015/6/12/8767221/vox-first-person-explained"><strong>submission guidelines</strong></a>, and pitch us at&nbsp;<a href="mailto:firstperson@vox.com"><strong>firstperson@vox.com</strong></a>.</p>
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			<author>
				<name>Jenny Gold, Kaiser Health News</name>
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			<title type="html"><![CDATA[Congress tried to fix mental health care in 2008. Lawsuits charge it isn&#8217;t working.]]></title>
			<link rel="alternate" type="text/html" href="https://www.vox.com/2015/8/3/9069643/mental-health-parity-lawsuits" />
			<id>https://www.vox.com/2015/8/3/9069643/mental-health-parity-lawsuits</id>
			<updated>2018-09-14T15:56:56-04:00</updated>
			<published>2015-08-03T07:00:02-04:00</published>
			<category scheme="https://www.vox.com" term="Congress" /><category scheme="https://www.vox.com" term="Health" /><category scheme="https://www.vox.com" term="Health Care" /><category scheme="https://www.vox.com" term="Mental Health" /><category scheme="https://www.vox.com" term="Obamacare" /><category scheme="https://www.vox.com" term="Policy" /><category scheme="https://www.vox.com" term="Politics" />
							<summary type="html"><![CDATA[When it passed in 2008, the federal mental health parity law was supposed to be a major achievement for Americans with mental illnesses. Historically, people seeking mental health care often faced higher copayments and deductibles and more limited access to treatment than those with other conditions. The parity law was intended to fix that, ensuring [&#8230;]]]></summary>
			
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<p>When it passed in 2008, the federal mental health parity law was supposed to be a major achievement for Americans with mental illnesses.</p>
<div class="chorus-snippet center"> <p>Historically, people seeking mental health care often faced higher copayments and deductibles and more limited access to treatment than those with other conditions. The parity law was intended to fix that, ensuring they could get the treatment they needed with the same ease as patients with cancer, diabetes, or any other ailment. Though some states already had their own parity laws on the books, there were serious gaps in the protections they offered.</p> <p>At the time, Sen. Edward Kennedy (D-MA) <a href="http://www.mprnews.org/story/2008/10/03/parity_finalpassage">called the law</a> &#8220;historic,&#8221; and praised his colleagues for finally ending &#8220;the senseless discrimination in health insurance coverage that plagues persons living with mental illness.&#8221;</p> <p>But seven years after the federal law passed, many families say it has fallen far short of expectations. Researchers, attorneys, and other critics say patients with mental illnesses continue to face discrimination &mdash; largely because insurers have continued to limit treatment through strategies that are subtle and difficult to track.</p> <div class="float-right s-sidebar"> <h4>More on mental health</h4> <a href="http://www.vox.com/2015/1/8/7509715/depression-help" target="new" rel="noopener"><img data-chorus-asset-id="2515758" alt="94274715_b7bc3b4379_o.0.jpg" src="https://platform.vox.com/wp-content/uploads/sites/2/chorus/uploads/chorus_asset/file/2515758/94274715_b7bc3b4379_o.0.jpg"></a><p><a href="http://www.vox.com/2015/1/8/7509715/depression-help" target="new" rel="noopener">9 secrets I&#8217;ve uncovered about depression</a></p> <p><a href="http://www.vox.com/2015/1/28/7917079/obsessive-compulsive-disorder" target="new" rel="noopener">7 things I wish people understood about OCD</a></p> </div> <p>Enforcement of parity law, meanwhile, has been relatively lax. So far, the US government has not taken a single public enforcement action against an insurer or employer for violating the federal law. And only a handful of states have dug into whether insurers are complying with their parity laws.</p> <p>Henry Harbin, Maryland&#8217;s former mental health director who now consults on the issue, said insurers are taking advantage of the minimal oversight.</p> <p>&#8220;They can micromanage care down to almost nothing,&#8221; he says. &#8220;The enforcement in this area is a joke.&#8221;</p> <p>Some who worked on the law feel similarly, saying the Obama administration has been soft on enforcement to avoid angering health insurance plans, a group that helped pass the Affordable Care Act in the first place.</p> <p>&#8220;Insurance companies were part of the coalition that helped bring the ACA to life, and the administration feels an enormous debt of gratitude,&#8221; says Patrick Kennedy, the former congressman from Rhode Island who helped pass the parity law. &#8220;It&#8217;s a challenge politically to then step on the toes of those that brought them to the dance.&#8221;</p> <p>Health insurers disagree. Clare Krusing, a spokesperson for America&#8217;s Health Insurance Plans, the industry&#8217;s main trade group, said it is &#8220;a misperception&#8221; that enforcement has been weak. Insurers are working closely with federal and state governments, she said, and &#8220;have taken tremendous steps to implement these changes and requirements in a way that is affordable to patients.&#8221;</p> <p><strong> </strong></p> <p>Still, ensuring that mental health and other medical treatments are exactly on par has been a challenge for the industry &mdash; largely because they often demand different courses of treatment.</p> <p>&#8220;A treatment plan for diabetes or a chronic heart disease is very different from a treatment plan for a patient that&#8217;s seeking care for depression or another mental illness,&#8221; she said. &#8220;It&#8217;s not a math formula.&#8221;<strong></strong></p> <p><strong> </strong></p> <h3>Millions of Americans have long struggled to afford mental health care</h3> <img data-chorus-asset-id="3918900" alt="patrick kennedy" src="https://platform.vox.com/wp-content/uploads/sites/2/chorus/uploads/chorus_asset/file/3918900/GettyImages-99575673.0.jpg"><p class="caption">Rep. Patrick Kennedy (left) at a 2007 hearing on the mental parity law. (Bill Clark/Roll Call/Getty Images)</p> <p>More than 43 million Americans ages 18 or older &mdash; about one-sixth of all adults &mdash; reported having a mental illness in 2013, not including substance abuse disorders, according to survey <a href="http://www.samhsa.gov/data/sites/default/files/2013MHDetTabs/NSDUH-MHDetTabs2013.pdf">data by the Substance Abuse and Mental Health Services Administration (SAMHSA)</a>. Of those, the agency found that fewer than half received any treatment, citing cost as the biggest barrier.</p> <p>Before the parity law passed, insurers frequently limited mental health treatment by making patients pay a greater share of costs than for other types of care, and by putting hard limits on the number of visits a patient could have annually. In 2002, for example, <a href="https://kaiserfamilyfoundation.files.wordpress.com/2013/04/3251.pdf">just 12 percent</a> of covered workers received unlimited coverage for outpatient mental health visits.</p> <p><q class="right" aria-hidden="true"><span class="q__inner">43 million American adults report struggling with mental illness</span></q></p> <p>By requiring equal coverage, the federal parity law went a long way toward eliminating such obvious, quantifiable discrepancies.</p> <p><a href="http://www.dol.gov/ebsa/pdf/hhswellstonedomenicimhpaealargeemployerandghpbconsistency.pdf">Research shows</a>, for instance, that most insurers have dropped annual limits on the therapy visits they will cover. Higher copayments and separate mental health deductibles have become less of a problem. In 2011, a survey by Aon Hewitt found that just 6.5 percent of employer-sponsored plans still had outpatient visit limits for mental health and substance abuse treatment, a marked contrast to 2002.</p> <p>But research also points to continuing inequities when it comes to less hard-and-fast decisions about coverage.</p> <p><a href="http://www.dol.gov/ebsa/pdf/hhswellstonedomenicimhpaealargeemployerandghpbconsistency.pdf">Data compiled on health plans in 2010</a>, the first year of the national parity law&#8217;s implementation, found that insurers frequently reviewed mental health treatment more strictly than other care. For instance, they more often required &#8220;preauthorization&#8221; for doctor visits or made patients &#8220;fail first&#8221; at one level of care before getting approval for another.</p> <p><a href="http://www.jhsph.edu/news/news-releases/2015/despite-federal-law-some-insurance-exchange-plans-offer-unequal-coverage-for-mental-health.html">A study</a> this year from the Johns Hopkins Bloomberg School of Public Health found that a quarter of the plans sold on two state Obamacare exchanges appeared to violate the federal parity law in various ways, including requiring higher cost sharing for mental health. The states, one large and one small, were not named.</p> <p><q class="center" aria-hidden="true">&#8220;Insurers have become more crafty,&#8221; one lawyer charges</q></p> <p>Among the murkier areas of insurer compliance is &#8220;medical necessity&#8221; review &mdash; in which insurers decide whether a patient requires a certain treatment and at what frequency. In <a href="http://www.nami.org/About-NAMI/Publications-Reports/Public-Policy-Reports/A-Long-Road-Ahead/2015-ALongRoadAhead.pdf">a 2015 survey</a> by the National Alliance on Mental Illness, an advocacy group for mentally ill people and their families, patients said they were denied payment because treatment was deemed &#8220;not medically necessary&#8221; twice as often for mental health as for other medical conditions.</p> <div class="float-right"> <img data-chorus-asset-id="3918854" alt="u56aOeh-S1CVK_WKlh-69WbsWyrGUKrcfCP5gOGor_Q_CVPtmB5vcrOZa_gMUochrs6hzZUTj1XGAZS-p-iEGzo_2_LEPc7QhJhWOvY76G7_7vSIwpU0LvH-88qcxt07jZM.0.jpeg" src="https://platform.vox.com/wp-content/uploads/sites/2/chorus/uploads/chorus_asset/file/3918854/u56aOeh-S1CVK_WKlh-69WbsWyrGUKrcfCP5gOGor_Q_CVPtmB5vcrOZa_gMUochrs6hzZUTj1XGAZS-p-iEGzo_2_LEPc7QhJhWOvY76G7_7vSIwpU0LvH-88qcxt07jZM.0.jpeg"><p class="caption">Attorney and psychotherapist Meiram Bendat at his home in West Hollywood, California. Bendat focuses on mental health cases and has filed several cases alleging violations of parity law. (Heidi de Marco/Kaiser Health News)</p> </div> <p>&#8220;&#8216;Medical necessity&#8217; is the insurers&#8217; last hurrah,&#8221; said Meiram Bendat, an attorney and psychotherapist who runs a law firm in Los Angeles focusing on mental health cases and has filed several cases alleging violations of parity law. &#8220;Insurers have become much more crafty at coming up with protocols that are not expressed numerically, that are more difficult to spot.&#8221;</p> <p>One of Bendat&#8217;s clients is Michael Kamins, who sued his insurer in a dispute over the coverage provided to his young adult son who has bipolar disorder.</p> <p>His son, then 20, had been hospitalized twice after a recent suicide attempt, Kamins said. At first, the insurer paid for visits with the psychiatrist several times each week. But a few months after the second hospitalization, the insurer explained it would no longer cover such regular visits. Instead, the company claimed it was only &#8220;medically necessary&#8221; for him to see a psychiatrist twice a month.</p> <p>&#8220;There was steam coming out of my ears,&#8221; Kamins recalled, his face reddening at the memory. &#8220;This is my kid&#8217;s life!&#8221;</p> <p>With limited treatment, Kamins says his son again became suicidal and violent. Eight months later, he ended up in a psychiatric hospital again.</p> <p>Kamins filed <a href="http://www.psych-appeal.com/wp-content/uploads/2015/02/2015-02-06-First-Amended-Complaint.pdf">the suit</a> in New York state court in June 2014, becoming one of just a small group of people around the country to sue alleging federal or state parity laws were violated when patients with mental illness were held to a stricter standard than those with other medical conditions.</p> <p>Bendat, who is seeking class-action status in the Kamins case and has filed other parity suits in New York, Illinois, and California, said attorneys are acting because the government hasn&#8217;t.</p> <h3>Mental health advocates say new laws have fallen short of expectations</h3> <img data-chorus-asset-id="3923664" alt="psychiatrist" src="https://platform.vox.com/wp-content/uploads/sites/2/chorus/uploads/chorus_asset/file/3923664/GettyImages-498862717__1_.0.jpg"><p class="caption">A patient exits a psychiatrist&#8217;s office. Advocates charge that insurers are not providing adequate access to mental health services. (BSIP/Getty News Images)</p> <p>The federal government does not have one specific agency overseeing the implementation of mental health parity. Instead, a complex web of agencies shares jurisdiction. This includes the departments of Labor, Health and Human Services, and Treasury, as well as state insurance commissioners.</p> <p>Most consumers don&#8217;t know they have new rights, advocates say, and those who do often don&#8217;t know where to turn for redress.</p> <p>&#8220;It gets very complicated for the average person,&#8221; said Carol McDaid, who runs the <a href="http://www.parityispersonal.org/">Parity Implementation Coalition</a>, an advocacy group created to make sure parity laws are properly enforced.</p> <p>&#8220;They&#8217;re already in a [mental health] crisis, looking for help, and they don&#8217;t know if they should write and complain to their state insurance commissioner, the Department of Labor, the health department. It gets very difficult.&#8221;</p> <p>The Department of Labor, which is responsible for monitoring employer-sponsored coverage, set up a complaint line for consumers. But since 2010, just 867 of the 1.5 million total health insurance inquiries made to the Department of Labor had to do with the parity law, most of which were not complaints, a spokesperson for the department said in May.</p> <p><q aria-hidden="true" class="center">&#8220;It gets very complicated for the average person&#8221;</q></p> <p>Of those, a total of 140 alleged parity law violations were found. All were resolved through &#8220;voluntary compliance,&#8221; in which the employer agreed to pay for the patient&#8217;s services, the spokesperson said. He said that the investigators also requested that the insurers change their broader policies when they appeared to violate parity law.</p> <p>Separately, officials at Health and Human Services found 196 possible violations of parity law by insurers from September 2013 through September 2014, a spokesperson said. In each case, she said, plans voluntarily made changes or told the agency they believed their plan was in compliance with the law.</p> <p>No federal agency has taken any public action such as filing a lawsuit or levying a fine. Mental health advocates say the confidential agreements in individual cases were not subject to wider scrutiny and set no broader standard for insurers.</p> <p>&#8220;Our problem is that these investigations are all kept secret,&#8221; McDaid said. They have no effect on what other employers or insurers do, and consumers don&#8217;t learn what to look out for, she said.</p> <p>Without strong government enforcement, patients and families say they are largely left to their own devices. But demonstrating that an insurer has violated parity rules requires a detailed analysis of a plan&#8217;s mental health and medical benefits. And though the law requires that insurers disclose that information, critics say they often do not comply.</p> <p>The Parity Implementation Coalition in Washington, DC, has received hundreds of consumer complaints to its helpline, McDaid said. But she said virtually no insurers will release documents that would allow a detailed comparison of how coverage determinations are made in mental health versus other health cases.<strong> </strong></p> <p><q aria-hidden="true" class="right"><span class="q__inner">Insurers say equity is complicated &mdash; treating diabetes is different from treating depression</span></q></p> <p>Krusing of the insurers&#8217; association insisted that such documents are being made available to patients and providers upon request. &#8220;Plans are committed to being transparent about their coverage decisions,&#8221; she said. Decisions to deny treatment, she said, are based on ensuring that patients receive care based on the best medical evidence.</p> <p>&#8220;We are still at a point in the health system where patients face wide variation in the type of care they&#8217;re receiving,&#8221; she said. &#8220;Oftentimes we see tests and procedures done that are costly and unnecessary for the type of care that they&#8217;re seeking or even help or benefit their condition.&#8221;</p> <p>The federal government is considering whether to tighten disclosure rules for insurers. In the meantime, some consumers, including the Kamins, are turning to the courts.</p> <h3>Father says insurer fought him &#8220;tooth and nail&#8221;</h3> <img data-chorus-asset-id="3918824" alt="kamins" src="https://platform.vox.com/wp-content/uploads/sites/2/chorus/uploads/chorus_asset/file/3918824/5iheDN5_f47LfpsNNR2wBVDiabLSUn2CF7NW7Yb__TQ_VM0d6S1A_AaI_QNaN1A_S-jRJGLOP9YljumCYVMTmyY_HG4O0ikIkjjUFyA5u6B7TEgn-UT_jnZ8VZW-KlTiT0c.0.jpeg"><p class="caption">Michael Kamins sits in his son&#8217;s room at his house in West Hollywood, California. (Heidi DeMarco/Kaiser Health News)</p> <p>Kamins&#8217;s son had always been a star, according to his father, who holds his power of attorney and asked that the young man&#8217;s first name be withheld for privacy reasons.</p> <p><strong> </strong></p> <p>A few months after heading to an Ivy League college, however, he started experiencing symptoms of depression, his father said. His grades slipped. He stopped eating, going to class, or getting out of bed. He began experimenting with drugs, including cocaine. Then, in the spring of 2011, he tried to kill himself in his dorm room, according to Kamins and his lawsuit.</p> <p>His parents brought him home to Los Angeles, where the family lives while the elder Kamins commute back and forth to New York for his work. The family had a robust insurance policy through Kamins&#8217;s job, so Kamins called the top-rated residential psychiatric programs in the area.</p> <p>But Kamins alleged that his insurer, OptumHealth Behavioral Solutions, would not cover inpatient care before his son had tried an outpatient program that focused on drug addiction.</p> <p>That marked the first of several violations of parity law, Kamins&#8217;s lawsuit argues. By requiring the young man to &#8220;fail first&#8221; at a lower level of care before paying for more expensive residential treatment, Optum, a subsidiary of UnitedHealth Group, had created an unfair and illegal obstacle to mental health treatment, the lawsuit alleges.</p> <p>&#8220;Imagine someone going to a hospital and being told you can&#8217;t get open-heart surgery in the midst of a heart attack because you haven&#8217;t tried aspirin or nitroglycerine first. That&#8217;s the absurdity of it,&#8221; said Bendat, the Kaminses&#8217; lawyer. &#8220;It&#8217;s just a way to discourage higher levels of care that we would never tolerate in the non-psychiatric context.&#8221;</p> <p>In a written statement on the current case, Optum officials said they &#8220;take the mental health needs of each of our members very seriously, and we are committed to helping them get care that has shown to be most effective in helping people overcome and live better with mental and emotional challenges.&#8221;</p> <p>The lawsuit contends Optum made it much more difficult for Kamins&#8217;s son to get mental health treatment than it would for other conditions.</p> <img data-chorus-asset-id="3923676" alt="mental health share" src="https://platform.vox.com/wp-content/uploads/sites/2/chorus/uploads/chorus_asset/file/3923676/vox-share__3_.0.png"><p>When Optum wouldn&#8217;t cover his son&#8217;s regular psychiatry visits, Kamins tapped into his retirement funds to cover the costs. But his son spiraled downward and landed back in a psychiatric hospital.</p> <p>That&#8217;s when Kamins decided to sue.</p> <p>&#8220;The irony in all this is that Optum fights tooth and nail to dole out care for my son. But had they allowed him upfront to get the care he needed, he might not have ended up back in the hospital, which they had to pay for,&#8221; he said.</p> <p>Added his attorney, Bendat: &#8220;They&#8217;re businesses, and they operate to make a profit. When they wake up and realize it doesn&#8217;t make good financial sense for them to skirt parity, then we might get some traction.&#8221;</p> <p>As for Kamins&#8217;s son, he returned to college in the fall of 2013. The next year, his father&#8217;s employer contracted with a new insurer, which Kamins said gave the young man greater access to care and helped him stabilize.</p> <p>Now 23, he is scheduled to graduate next year.</p> <p><em>This story was published in collaboration with <a href="http://www.kaiserhealthnews.org/">Kaiser Health News</a> (KHN), a nonprofit national health policy news service.</em></p> </div>
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			<author>
				<name>Jenny Gold, Kaiser Health News</name>
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			<title type="html"><![CDATA[Study: suffering at end of life is getting worse, not better]]></title>
			<link rel="alternate" type="text/html" href="https://www.vox.com/2015/2/3/7969987/dying-america-painful" />
			<id>https://www.vox.com/2015/2/3/7969987/dying-america-painful</id>
			<updated>2019-03-04T05:57:38-05:00</updated>
			<published>2015-02-03T10:40:02-05:00</published>
			<category scheme="https://www.vox.com" term="Books" /><category scheme="https://www.vox.com" term="Culture" /><category scheme="https://www.vox.com" term="Politics" />
							<summary type="html"><![CDATA[It&#8217;s been more than 15 years since the Institute of Medicine released its seminal 1997 report detailing the suffering many Americans experience at the end of life and offering sweeping recommendations on how to improve care. So has dying in America gotten any less painful? depression in the last year of life has increased 26 [&#8230;]]]></summary>
			
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<p>It&rsquo;s been more than 15 years since the Institute of Medicine released its <a href="http://www.iom.edu/Activities/Aging/TransformingEndOfLife.aspx">seminal 1997 report</a> detailing the suffering many Americans experience at the end of life and offering sweeping recommendations on how to improve care.</p>

<p>So has dying in America gotten any less painful?</p>
<p><q aria-hidden="true" class="center">depression in the last year of life has increased 26 percent</q></p>
<p>Despite <a href="http://kaiserhealthnews.org/news/palliative-care-iowa/">efforts to build hospice and palliative care programs</a> across the country, the answer seems to be a resounding no. The number of Americans experiencing pain in the last year of life actually increased by nearly 12 percent between 1998 and 2010, according to <a href="http://medicaring.org/2015/02/02/symptom-prevalence/">a study</a> released Monday in the <a href="http://annals.org/article.aspx?articleid=2107746">Annals of Internal Medicine</a>. In addition, depression in the last year of life increased by more than 26 percent.</p>

<p>That&rsquo;s the case even though guidelines and quality measures for end-of-life care were developed, the number of palliative care programs rose and hospice use doubled between 2000 and 2009.</p>

<p>&#8220;We&rsquo;ve put a lot of work into this and it&rsquo;s not yielding what we thought it should be yielding. So what do we do now?&#8221; asked study author Dr. Joanne Lynn, who directs the Center for Elder Care and Advanced Illness at the Altarum Institute.</p>
<h2 class="wp-block-heading">Prolonged dying may prolong suffering</h2>
<p>The study looked at 7,204 patients who died while enrolled in the national Health and Retirement study, a survey of Americans over age 50. After each participant&rsquo;s death, a family member was asked questions about the person&rsquo;s end-of-life experience, including whether the person suffered pain, depression or periodic confusion. Those three symptoms were all found to have become more prevalent over the 10-year analysis.</p>

<p>One reason, Lynn said, is that doctors are using a greater range of high-tech treatments, which can lengthen the process of dying without curing the patient. &#8220;We throw more medical treatment at patients who are on their way to dying, which keeps them in a difficult situation for much, much longer,&#8221; she said. &#8220;We&rsquo;ve increased the number of people put on ventilators and kept in hospitals, and we simply have more treatments that are possible to offer.&#8221;</p>
<p><q aria-hidden="true" class="center">&#8220;We simply have more treatments that are possible to offer&#8221;</q></p>
<p>The majority of our research, she added, focuses on wiping out diseases, rather than long-term supports or symptom management for people with chronic conditions or disabilities associated with aging: &#8220;Think about how much we invest in curing Alzheimer&rsquo;s disease, and how little we put into making the course of Alzheimer&rsquo;s better.&#8221;</p>
<h2 class="wp-block-heading">&quot;A lot of practitioners aren&#039;t honest&quot;</h2>
<p>Most physicians tend to<a href="http://www.vox.com/2014/10/15/6895171/how-doctors-measure-pain-brain-scan-fmri"> under-treat pain</a> and other symptoms at the <a href="http://kaiserhealthnews.org/news/institute-of-medicine-says-dying-in-america-is-harder-than-it-has-to-be/">end of life</a> because they don&rsquo;t recognize them or are <a href="http://www.vox.com/2015/1/11/7517211/end-of-life-care">hesitant to talk candidly about the process of dying and the pain associated with it</a>, said Dr. Tim Ihrig, a palliative care physician at UnityPoint Health in Fort Dodge, Iowa.</p>

<p>&#8220;A lot of practitioners aren&rsquo;t honest. We fail to empower patients with the truth,&#8221; said Ihrig. &#8220;In that setting, it&rsquo;s easier to continue to do procedures and diagnostics rather than having that conversation, which is very honest and very difficult.&#8221;</p>
<p><q aria-hidden="true" class="right">&#8220;people say &#8216;I don&#8217;t want to take away someone&#8217;s hope.'&#8221;</q></p>
<p>Take a cancer patient who has stopped eating and is writhing in pain, he said. An oncologist might recognize the person is going to die, but rather than telling the patient, he or she begins another round of treatment that causes more pain and suffering.</p>

<p>&#8220;We don&rsquo;t have the vernacular in our society to have the conversation about the end of life. People say, &lsquo;I don&rsquo;t want to take away someone&rsquo;s hope.&rsquo; But in a metastatic pancreatic cancer, for example, we have to redefine what we mean by hope,&#8221; he said, citing one of the most deadly cancers.</p>

<p>Often, those conversations aren&rsquo;t happening until the last days or hours of life, according to Ihrig.</p>

<p>Jonathan Keyserling, a senior vice president with the National Hospice and Palliative Care Organization, points out that half of all hospice patients receive hospice care for less than 30 days.</p>

<p>&#8220;If these patients had been under the care of a hospice or palliative care program [earlier], their pain and symptoms could have been brought under control for a much longer and sustained period of time,&#8221; Keyserling said via email.</p>

<p>It&rsquo;s possible, however, that caregivers interviewed in the study simply reported more suffering, reflecting Americans&rsquo; changing awareness of pain and depression over the past decade.</p>

<p>&#8220;We&rsquo;ve raised the expectation of better pain management over the years, which may make [the caregivers interviewed] more likely to report it,&#8221; says Rosemary Gibson, author of The Treatment Trap and senior advisor at The Hastings Center, a bioethics think tank based in New York. There are many more Americans diagnosed with depression today than in 1998, she added, &#8220;so it&rsquo;s not surprising that people would report it more.&#8221;</p>
<h2 class="wp-block-heading">&quot;We did nothing to stop the tsunami of overuse&quot;</h2>
<p>Nonetheless, Gibson said, the country has a long way to go in improving care at the end of life. The increase in palliative care and hospice use over the last decade was just &#8220;an oasis in the desert. We did nothing to stop the tsunami of overuse [of aggressive treatments] and doing things to people at the end of life that have no benefit.&#8221;</p>

<p>It&rsquo;s time to pick up the speed of change, said study author Joann Lynn.</p>

<p>&#8220;We are all going to pass through this part of our lives, and we have a strong interest in its not being awful. So let&rsquo;s buckle down and get it right.&#8221;</p>

<p><em>This article was produced by </em><a href="http://kaiserhealthnews.org/"><em>Kaiser Health News</em></a><em>, a nonprofit national health policy news service, with support from</em><a href="http://www.thescanfoundation.org/"><em> The SCAN Foundation</em></a><em>.</em></p>
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