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Archive for the ‘Advocacy’ Category

Exciting news came at the end of the year for Gary Schwitzer’s Health News Review project which had lost the funding that supported the team of reviewers that analyzed the accuracy of health stories in the news and published their findings. HNR was awarded a two-year, $1.3 million grant from the Laura and John Arnold Foundation to continue and expand its work, which will now be housed in the new Center for Media Communication and Health in the U of Minnesota School of Public Health.

I’ll be looking forward to more important stories coming our way soon to share here.  And all of us can hone our critical thinking skills on health news stories by applying the HNR  framework anytime:

What’s the total cost?
How often do benefits occur?HealthNewsReview
How often do harms occur?
How strong is the evidence?
Is this condition exaggerated?
Are there alternative options?
Is this really a new approach?
Is it available to me?
Who’s promoting this?
Do they have a conflict of interest?

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News from China  gives us even more pause to reflect on the access to medicines scenario. The situation in the US where there are no good excuses for unaffordable medicines, pales in comparison to this chilling tale of a patient whose actions to secure the life-saving drug imatinib mesylate at an affordable price, has resulted in his criminal prosecution.

Veenat400mgTo prosecutors, a leukemia patient named Lu Yong is a criminal involved in credit card fraud and a counterfeit drug scam. But to 1,000 fellow leukemia patients in China, Lu is an unsung hero for helping them get access to cheap, life-saving generic medicines from India.

His crime?  Selling fake drugs and breaking a law about purchase of international credit cards.  What Lu did was considered criminal because any drug  produced in or imported into China without the government’s approval is classified as a “fake drug,”  and Lu purchased international credit cards online to facilitate the transactions. China.org.cn reported that:

The defendant, Lu Yong, was diagnosed with chronic myelocytic leukemia in 2002. He was prescribed Gleevec, a drug produced by Swiss drug-maker Novartis, which cost 23,500 yuan (US$ 3,775) per month, far too expensive for average Chinese families. Lu was even more depressed since the expenses of treating leukemia are not covered by China’s medical insurance system.

Lu later found out that India produced a generic drug which was comparable to Gleevec but which cost only 4,000 yuan, about 17 percent of the cost of Gleevec. He took the medicine himself and found it effective. Later, Lu began helping several thousand fellow patients buy the drug, since the purchasing process was difficult and some patients were not able to fill out the English purchase forms.

Meanwhile, Lu’s trial has been postponed due to his health problems, and some 300 fellow patients with CML have signed an online petition asking for his release.

Also of significance is the astronomical price of Gleevec in China,  said to be the highest in the world, which led  Lu to seek an alternative.  As a point of comparison, Costco’s US online pharmacy is now selling a 30-day supply of the standard 400mg dose of Gleevec for $9022.05.

Glivec400mg

 

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A bevy of news stories local and national have highlighted the ever-worsening situation for consumers , especially  for folks who need so-called specialty drugs but also for the much larger segment of the population who use plain old generic medicines.  While raising awareness is essential, mostly what we are seeing, is increased an amount of talk about the problem, but less often are suggestions being offered in the way of sustainable solutions. Shock over the price for new Hepatitis C drug Sovaldi  was a wake-up call for policy makers and the public; it remains to be seen what will be prescribed as a remedy.  Here’s a sampling of  some more recent headlines:

Small group of specialty drugs could make up half of total pharmacy spending by 2018

Prices Soaring for Specialty Drugs, Researchers Find

Generic drug prices skyrocket in past year

Will Rising Prices for Some Generic Drugs Never End? Monthly Cost for One Heart Drug Can Approach $1,200

Pharmacists Report Soaring Generic Drug Purchasing Prices Impacting Patients, Pharmacies

New strategies needed to curb specialty drug costs

While some in Congress have been asking why in 2014, it remains to be seen if the political will can be mustered anytime soon to secure pricing changes from Big Biopharma.

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In recent weeks I’ve received email alerts announcing  “Hospitals Making Progress on Health Care Disparities“, a new study from the American Hospital Association’s Hospitals in Pursuit of Excellence program and associated organizations.   I took a look  first at the infographic accompanying the notices, and then at the published study itself, the 2013 Diversity and Disparities: A Benchmark Study of U.S. Hospitals. It was no surprise to read that the demographic profile of hospital executives and boards is still so far from representative of  the general  population, since the last HPoE study in 2011. However, the 2013 study reports data on language services in hospitals that raised my eyebrows ( 2011 comparison data points shown in parentheses):   EquityofCareStudy

  • 95%  (90%) are collecting data on primary language of patients
  • 87% (80%) are translating forms and documents for patients
  • 66% (61%) collected information on patient language needs

Leaving aside the matter of ascertaining the difference between collecting “primary language of patient” and “patient language needs,” these highly encouraging results led me to seek details in the source report. Having recently done extensive research for my own presentation on the status of  language services in healthcare for the 2014 WASCLA Summit, the HPoE findings seemed even more amazing. What I found in the report itself , which did conclude that more needs to be done to achieve equity of care in the broader sense, was that some basic background and research points seemed not to have been included or were too limited in scope to be meaningful.  For example,  the report did not include the list of hospitals which had participated in the survey, nor how the recent cohort compares to the 2011 and 2009 participant groups. There was no discussion of the statistical validity of the response rate of 1109 hospitals (~19% of all 5922 AHA member hospitals invited to participate), nor how representative the response sample is for hospitals nationwide. For example, while the study noted that all data was self-reported,  there was no mention of the possibility that only hospitals which have disparities reduction initiatives chose to participate.  I am pursuing the actual data used for the study, and hope to have information to share soon.

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Old US Public Health Service Hospital (known as Pacific Tower during its tenure as Amazon HQ building) to become new satellite campus for allied health professions programs of Seattle Central Community College and serve as site for public agencies and NGOs. AmazonBeaconHillHQ*304

Seattleite Jeanne Sather, author of Assertive Cancer patient  blog ,died from metastatic breast cancer  15 years after her original diagnosis

In June the King County Board of Health unanimously approved creation of drug take-back system for county residents , to be financed by a 2-cent per Rx tax. On Dec. 1, PhRMA filed a lawsuit against King County , claiming that the plan causes a financial burden for patients and that in-home disposal of  medicines is the best way to keep Rx drugs out of the wrong hands.

State to review hospital affiliations — Catholic and otherwise

Public hospital CEO gets pay cut to $1 M per year, at Renton’s Valley Medical Center

Harborview to close  pediatrics, women’s, & family clinics

Health Care Reform for American Indians and Alaska Natives 2013  including WA-specific page

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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.

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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.

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