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Consumer info fact sheets  translated into WA’s threshold written languages   (Chinese, Lao, Khmer ( Cambodian), Korean, Russian,  Somali, Spanish, and Vietnamese) were posted on Dec. 16, just one week before the deadline to start an application for coverage to be effective Jan. 1, 2014. In an unrelated development, HBE  decided on this brief extension  for completing applications due to various  problems people have had in being able to use the online forms and or access phone customer services.  Regarding the translated fact sheets, it’s taken almost 6 months for their publication to replace the original problematic versions that were taken down from the site.
However, the new fact sheets are not easy to find as they are not posted on the consumer website,  but located exclusively on the HBE corporate website.  The corporate site features a line at top right-hand side of homepage entitled “Information in Other  Languages” which links to the fact sheets page, plus also links out to the consumer website.  In contrast, the consumer Healthplanfinder site (which is in both  English and Spanish) does not offer any such subject line, nor does it display a link to corporate site.  The Healthplanfinder site likewise does not contain any readily visible clear statement of consumer  language access or disability access rights, except for a message in tiny font on bottom of the homepage that says [sic] : If you need additional language or disability accomodations, you may call 1-855-WAFINDER (1-855-923-4633)  On the Spanish version of the website, this statement illustrates yet another example of  faulty translation, as the term “disability accomodation” is twice translated, and very ungrammatically, as  “discapacidad alojamiento”  which means disability lodging.  Sure enough, a quick check on Google Translate  English > Spanish reveals  “lodging” as the first  translation for “accommodation.”  Since 2012 advocates had been recommending the inclusion of multilingual tag lines and/or translated summaries sections for the website. Interpretersymbol

Information on some metrics for the Healthplanfinder call center became available last week with the release of the  November Healthplanfinder Data Report. On the language access side of things (p.10 of the report)  the numbers are not encouraging: the call center received almost 12,000 calls in Spanish, but handled only some 1600 of them. The call center in Spokane has bilingual Spanish-English staff (reported as 6 out of 80 employees at start-up) on site and routes calls in other languages to a telephonic interpreter service. For calls in all languages besides Spanish combined, 1045 were actually handled (answered)out of 3621 calls attempted. The report does not state if the multilingual calls are included in the totals for approximately 35,000 calls  handled in November or the almost  158,000 calls throttled (deflected from the system, i.e. not put into the queue to await a response).  While the HBE is said to be increasing staffing for the call center,  any increases planned for its language capacity are as yet unknown. Given the demand, it would seem that Spanish-speaking callers too could benefit from immediate access to interpreter services.

The irony was not lost for me that while writing on the positive results of the FDA’s use of  translation services, that here in my state, once known as a national leader in language services, we are still struggling to get quality translations for our Health Benefits Exchange (HBE).  The efforts  to achieve this goal have been a major focus for the Washington State Coalition for Language Access, and its been a year now since we co-authored with Northwest Health Law Advocates the report Language Access in Washington under the Patient Protection & Affordable Care Act  expressly for the HBE efforts. Now with 175,000 enrollees, Washington State deserves the praise it’s getting for the record-breaking enrollment figures in the new health insurance  marketplace Washington Healthplanfinder, WA_Healthplanfinder_RGBespecially compared to the situation in neighboring Oregon and to the federal Healthcare.gov platform. But the picture is much less rosy regarding providing equal access for Washingtonians with limited English proficiency (LEP), who now number some 8% of state population or half-million residents, representing an increase of 210 % in the past decade . Demographic data on enrollees is said not to be available.

We are now less than 2 weeks away from the enrollment deadline for coverage to start Jan. 1, 2014, and the consumer fact sheets that were intended to inform the public of the options under the ACA have not yet been made available to Washington’s LEP population. Even though work began in July to replace the problematic original translations – errors brought to HBE’s attention by advocates- there are still no consumer fact sheets available in Washington’s  threshold languages ( in written form these are: Chinese, Lao, Khmer, Korean, Russian, Spanish, Somali, and Vietnamese).

In addition, the Spanish versions of the paper application for Healthplanfinder, while continuing to be publicly available, have contained horrific translation errors.  In the section  which inquires about the applicant’s citizenship status, the phrase ” Non-citizen legally present in the US”  was translated into Spanish to mean just the opposite,  i.e., the translation says “ non-citizen not legally present….”  ACA, complete with the  I-word in Spanish in version #1.  After the mistake was identified on Oct. 15 , again by advocates,  staff said they took immediate action to have the vendor correct it.  The screenshots included here show the sections containing the mistranslations.

Spanish version #1

And yet, advocates identified that the new translation contained the same error, just written with different wording.   Here is Spanish version #2, as it appeared on Nov. 14: Screen shot 2013-12-05 at 11.00.31 AM

This one particular error may now have been recently corrected  for a 3rd iteration, through volunteer  efforts of local language access advocates trying to beat the clock to help consumers. However, we hear anecdotally that more translation concerns persist and can’t be confident that there are not similar errors in the translations in the other languages.

What remains a mystery is how this sorry state of affairs has come about, and if there were ever robust quality assurance measures in the procurement chain for the translations. It is beyond comprehension how such blatant errors could be made given that the work was done by vendors holding official State contracts who must affirm that they use  qualified translators and proper translation procedures. And if this is happening in Spanish, the 2nd most used language in both our State and nationally,  and thus one for which there is an ample number of nationally-certified translators available to do the work, there is a real reason to fear that similar egregious errors may exist in other language translations.

Shortly before Thanksgiving, HBE staffers announced  at a meeting of its Health Equity Technical Advisory Committee, that work halted back in June to create a Language Access Plan  (LAP) for the HBE requested by the TAC , will resume in the new year.  LAPs are meant to serve as blueprints to guide the work of agencies and programs to comply with the laws requiring they provide language services, and  to help prevent the kind of  problems that we’ve being seeing here in the other Washington.  I’ll continue to report on the work in progress.

Two recent news stories about honey, illustrate yet again the vital importance of communications to health.  In these completely unrelated cases, it was all about translations, the rendering of messages from one written language to another. The fraudsters seemed to have assumed they could get away with selling their products to unsuspecting consumers due to a lack of language skills on the part of regulatory authorities.

In September,  Bloomberg Businessweek  broke the story on a honey scandal at the global level with an article entitled The Honey Launderers: Uncovering the Largest Food Fraud in U.S. History , describing a convoluted plot by German company ALW to sell millions of pounds of Chinese honey in the US, by disguising its origins.  Over the course of several years, ALW arranged with the Chinese brokers to channel their product through other countries, where it was filtered, doused with additives to disguise its unpleasant  flavor, and re-labeled  to make it seem to have come from nations authorized to export honey to the US.  Some of the adulterated honey was also found to contain residues of the antibiotic chloramphenicol, long banned in the US.  The impetus for the fraud was purely financial , as honey fetches top dollar in this country, the major world consumer.  Over a decade ago when domestic beekeepers complained that honey imports from China were seriously undercutting their business, the US imposed such stiff tariffs on Chinese honey imports that little enters the country legally any more. But the super-cheap price of honey in China has remained a lure for international exporters. Some Chinese feat_honey39chart_630producers seize this opportunity to increase their own profits by artificially  increasing the quantity of honey available to be sold.  According to the FDA investigation of this case, a number of  techniques like harvesting the honey early and not letting the bees complete the process naturally were routinely used in China, along with machine-drying the honey to speed things along.  ALW abetted the process and instructed its 2nd-country middlemen to add  sweeteners to disguise the sour taste caused by the premature harvesting.

In order to keep the doings secret, ALW  officials exhorted the young German employees sent to run the firm’s US operations to use the phone, not emails, to discuss business and to conduct all communications in their native language.  While the staff did restrict their discussions to the German language, they continued to use emails for correspondence. Their missives were later translated into English during the course of the FDA investigation.  The federal  prosecutor who worked on the case commented:

“They were extremely sophisticated and intelligent in some ways, but so sloppy in other ways. What do they think—no one can translate German?”

Earlier in the year in a less notorious case, the honey firm Nature Nate’s in Texas garnered FDA censure because it violated the instructions issued by the FDA following a 2012 audit, when the company was ordered to stop advertising its honey in ways that characterized it as a drug, i.e. by making various health claims for its products.  While Nate’s had promised to stop the spurious marketing by Fall of 2012,  an FDA follow-up in mid-2013 found that the firm continued to make these claims on its Spanish-language website,  under the banner ” Remedios Caseros con Miel or Honey Home Remedies “, Spanish_honey_remedies describing such benefits (in English translation) as:

• “Food Poisoning. Blend 1 Tablespoon Apple Cider Vinegar and 1 Tablespoon of North Dallas Honey dissolved in a glass of chilled water.”

“‘[O]rganic honey’. A client of mine that is a doctor told me to try yours for allergy relief. It has COMPLETELY eliminated allergies for the entire household … it is our daily dose … “

A cached copy of the Spanish information on how to use Nate’s honey as an arthritis remedy said:

Para la artritis – 100% Pure Raw & Unfiltered Honey naturenates.com/espanol/para-la-artritis
“Receta 1. Tome una taza de agua caliente con dos cucharadas de miel y una cucharadita de canela en polvo por la mañana y la noche. …

FDA translation: “May Help with Arthritis. Recipe 1. Take 1 cup of hot water with two spoons of honey and one small teaspoon of cinnamon powder both morning and night. .. “

The FDA issued the new warning letter in June 2013, and Spanish version of  Nature Nate’s  website appears to have now been taken down.

And the phenomenon of the FDA using translation as an investigative tool is hopefully now a regular practice, as a evidenced by yet another recent case, this time involving the Sundial herbal supplement company which got an FDA Warning Letter based on claims made solely in Spanish which characterized its products as drugs.  As a commentator for Regulatory Affairs so aptly explained

…just because a product’s unapproved claims aren’t in English, that doesn’t mean FDA isn’t paying attention.

Just got this notification  from our local  branch of the U.S. National Library of Medicine,  Lister Hill National Center for Biomedical Communications. It the newest in their public service search tools offered to help find people affected by disasters worldwide.

India-3The long-awaited verdict on the latest appeal by Novartis was issued April 1 , to the relief of health justice advocates and patients in India and around the world. For seven years now, Novartis has challenged India’s patent laws which apply to Glivec, their brand of  the cancer drug  imatinib mesylate ( which the company spells as “Gleevec”  in North America, to uniformize  pronunciation) , an action which portended grave global problems for access to costly drugs in general.  India’s high court ruled that the form of Glivec which the company wished to patent was not a new drug  which would merit such status. The ruling is important to assure that affordable generic forms of vital medicines can be manufactured, but advocacy efforts will continue to be needed for future  drugs.  With so much published on the case  no need for me to repeat details here , among the excellent sources for those wishing to learn more  is Knowledge Ecology International and its IP-Health listserv.

 

Back from Hiatus

This blog has been on hold for a good while now as a result of life circumstances, despite best intentions.   On the day of my last post, my very elderly father took a fall  which caused a brain injury from which he ultimately succumbed.  Although he had declined considerably in the  preceding months, and had recently acknowledged that he might need to make a change in his living arrangements, he continued as his fiercely independent self and fell on his walk to the grocery store.   The previous day I had attended the 2012 Northwest Patient Safety Conference , including the excellent workshop Safe Passage: Opportunities to Reduce Harm While Providing Care at the End of Life   by Hope Wechkin, MD, Medical Director of Evergreen Hospice and Palliative Care.  Although the topic has long been of both personal and professional interest to me, I had no idea then how very valuable her practical advice would be as I dealt with negotiating my dad’s “safe passage.”  My only regret about his last weeks is the time that I had to spend dealing with bureaucracies instead of being at his side.

But despite all my background and almost a decade of experience as  Dad’s point person & caregiver, I had to be extremely assertive to get him a palliative care referral and then a hospice referral. Never once did the medical staff ever mention these subjects, despite my father’s condition. Once on board, the palliative care team ,and later the hospice nurses, were excellent. It’s a sad commentary indeed  on our broken system that these services are not offered routinely.

My plans for the blog this year are to continue to offer news and commentary on topics and issues that may not be getting so much attention in the general media.

Here’s the invitation from event organizers:

Friday, May 18, 2012, 7:00 to 9:30 PM
Friday Night at the Meaningful Movies Is pleased to present:
The film: “THE HEALTHCARE MOVIE” And a Community Discussion with guests:
• AARON KATZ, Principal Lecturer of Health Services and Global Health, UW
• DR. REENA KOSHY, National Physicians Alliance
• DR. SARAH WEINBERG, Physicians for a National Health Program & Healthcare For All – Washington, and
• LAURIE SIMONS AND TERRY STERRENBERG, The Filmmakers
LOCATION: Keystone Congregational Church, 5019 Keystone Place North, Seattle, 98103 (in Wallingford)     
Facilitated community discussion follows the film.
For more information: http://www.meaningfulmovies.org
Event is Free and Open To the Public

This documentary provides the real story of how the health care systems in Canada and the United States evolved to be so completely different, when at one point they were essentially the same. Most people under the age of 50, in both countries, are not aware of the intensity of the political struggle that led to the universal medical care system in Canada. Nor are they aware of the public relations campaigns, still active today, that have been prevalent in the United States since the early 1900’s to dissuade the public from supporting national health care.
Produced by Canadian/American couple Laurie Simons and Terry Sterrenberg, THE HEALTHCARE MOVIE reveals the personal and emotional impact on Canadians who now have access to universal health care because of the heroism of people who took a stand nearly 50 years ago. It also reveals the continuing struggle in the United States between the fear of government intervention and the right to quality health care for all people.
Every day people are dying or going bankrupt due to the ills of the United States system. Who are we in the face of this human tragedy? If you agree that people are more important than profits, then you must watch this film.

Headline scan

Recent news of note:

Report: Debt Collectors Work In Emergency Rooms, Demand Payment Before Patients Receive Care

Abbott To Pay $1.6 Billion To Settle Depakote Probes

Discrepancies on Medical Bills Can Leave a Credit Stain

American Pain Foundation Shuts Down as Senators Launch Investigation of Prescription Narcotics

Insurers back FDA plan for new drug category

Patients Share Of Expensive Specialty Drugs Is Rising

Racial, Socioeconomic Disparities Alleged In Autism Spending

Premera tries to gut drug benefits, Kreidler says no 

and a shout out to an excellent source of news and analysis with a focus on Oregon and the broader context:

The Lund Report: Unlocking Oregon’s Healthcare System

Those who have been following the saga of the leukemia wonder drug imatinib mesylate or Glivec (spelled Gleevec in North America to standardize pronunciation) may recall that it was said to be the first medicine for which a global price was set. At the time of its 2001 FDA approval, the worldwide price was US$2400/month, for  a base dosage of  a 30 day supply of 400mg caps.  Indeed, Novartis CEO  Daniel Vasella went to great lengths to discuss and justify both the high price and the pricing decision in his subsequent infomercial-type book  Magic Cancer Bullet: How a Tiny Orange Pill Is Rewriting Medical HistoryThe Gleevec story is notable too in that the typical pharma claim that the price is justified by R & D costs, was refuted by researcher Brian Druker MD, who detailed how most of the initial work on imatinib was publicly funded and he had to convince Novartis to  produce enough of it to begin clinical trials with CML patients. Dr. Druker has also gone on record to criticize  the price being charged for Glivec.

Since then patients in wealthy countries mostly have been clamoring for their  public or private insurance to cover  the drug (and its second-line successors) not that something be done about the price that is exorbitant even in their economies. Novartis  invested heavily in worldwide patient relationship marketing for Glivec , which has contributed to this phenomenon, a topic  explored previously in this blog. In recent years,  it has become much more common to hear complaints from US patients and even some of the big-box disease associations, about the escalating price of  drugs like Glivec and  especially for new biologics. But it has  been rare to to hear demands that something be done about drug prices.

So the recent posting of a patient petition on change.org calling for action to reduce the price of Gleevec is notable:  Novartis and US Representatives in Congress: Reduce to patients the cost of the drug, Gleevec.

The introduction of the petition reads:

Novartis developed this drug in the 1990s. In the years since then the price of the drug has increased astronomically. Novartis must have paid their research costs long ago, but the price just keeps rising. Patients with CML leukemia are dependent on the drug to keep them alive. Our US representatives should work with FDA to pressure Novartis to reduce the cost

Setting aside the issue of  misunderstanding that there are no price controls on prescription drugs in the US open market and that the FDA does not regulate drug prices, the petition is significant as a reflection of the increasing desperation of middle-class privately insured patients. They are among the majority here whose insurance status and/or income levels typically disqualify them for the patient assistance programs much touted by Novartis, whose global Gleevec sales generated $4.7B in 2011.   Many US patients are now finding that the Gleevec price has skyrocketed at the same time that insurers are requiring them  to pay a much larger share of its  hefty price tag.  The situation is quite simply unsustainable.

One person who signed the online petition shared:

I started taking Gleevec June 1, 2001, when it was first approved by the FDA. It cost $2400 for 30 pills. Now, these same pills cost $7367 per month. I pay $1035 per month for insurance to cover this cost. My insurance Co. gets billed for the drug. Why has Novartis raised the price so much? …

A look at  Costco’s online pharmacy, which has a reputation, anecdotal at least, for offering “good value” retail prices on Rx meds in the US, found the following cash price for a month’s supply of an  average dose (dosage  is individualized) of  30 tabs :  GLEEVEC 400 MG TABLET      $6,264.59

While Novartis is continuing its drag on its patent fight to combat the imatinib generics already on the market in India, these cannot yet be exported to the US.  The original  US patent for Glivec expires in 2015. In 2009, Sun Pharma  filed for and received tentative FDA approval for a generic imatinib for when that day comes.

Given the power of the pharma lobby the future remains very uncertain for any relief on the price of Gleevec , but the clamor of voices from the grassroots is a healthy development.

In these times of intense attention to healthcare from all quarters of the US,  a new study by USA Today and Kaiser Health News reporters focused on community clinics.  Over the past 2 decades community clinics have  developed from origins often as volunteer-run efforts, to become a vital part of  what is called the safety-net. Frequently they now are the sole source of care available to over 20 million people, often as the only providers who will accept patients covered by Medicaid,  and for the growing ranks of the uninsured. The sorry state of healthcare access would be far worse if it were not for community clinics.  These centers will play an important role too in the reforms set to start in 2014. It is expected that many who will become newly insured  by Medicaid will be seeking  care at community clinics. Long woefully underfunded, clinics will be eligible to receive help from the $10 billion approved by Congress for expanding their  service capacity.   

The report entitled  Community clinics have odds stacked against them  looked  at almost 1200 community clinics across the country, and ranked them based on the 6 categories of performance quality measures which federally qualified health centers (FQHCs) must report to the federal government.  The categories cover care for patients with diabetes and high blood pressure, rates of screening for cervical cancer and childhood immunizations, plus timeliness of prenatal care and rates of low birth-weight babies.

Using  2010 clinic performance data obtained by FOIA request, the reporting team found wide variations in care by center,  by region of the country, and between specific centers in the same city.  Generally, clinics in the South performed worse that those in New England, the Midwest, and California. Overall, their  survey showed community clinics not performing as well as the national averages for the study parameters .

There is more context to understanding the survey results however, that was not part of the report.  The National Association of Community Health Centers issued a statement about the report which while recognizing the value of examining clinic performance, expressed concern about the wrong impressions that the media study might give:

The article disregards the better quality care that most health centers achieve when compared to care provided to other low-income patients elsewhere.  However, at least the article does reveal what few Americans realize– that every health center reports on the quality of care their patients receive….

<snip>

…When you compare the federal data that is the focus of the USA Today article with national data from the National Center for Health Statistics, health centers performed better than national averages for entering women into prenatal care during the first trimester, childhood immunization rates, reduced low birth rates and hypertension control…..

NACHC recently published its report Health Wanted – The State of Unmet Need for Primary Health Care in America  which takes an in-depth look at the factors behind the consistent and increasing demand for community clinics, the links to social determinants of health and how funding has not kept up to meet population needs.  In FY 2011 for example, only 67 out of some 1900 applications for new health center service sites were funded.

Seattle/Local Health Guide extracted localized  figures from the report to create a Washington State Comparison Chart.  Janna Wilson, Senior External  Relations Officer for the Seattle-King County Department of Public Health shared additional concerns with me  in a personal  communication, about implications and lack of context  for specific data used for the local news article:

The data provided for Public Health represents a small subset of the patients we see—our homeless primary care patients. This is because Public Health’s federal health center grant comes under a targeted program called Health Care for the Homeless. Our federal data report, therefore, is specific to our homeless patients per federal reporting requirements.  As you know, homeless patients face barriers that often exacerbate medical and behavioral health conditions and complicate treatment plans.
 

While most community health center grants and programs are for the general low-income population, some — like ours — target special population groups such as homeless people or migrant workers.  There is nothing in the USA Today article that provides this important context. That said, quality improvement is a big part of our program for all our patients, whether homeless or housed.