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Archive for the ‘Healthcare Inequalities’ Category

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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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.

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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.

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As the new year starts, some ome items of note from near and far:

The breast implant scandal strips away the glossy euphemisms of cosmetic surgery

S. Korea approves Asia’s first anti-leukemia drug

Nicotine Gum and Skin Patch Face New Doubt

No Benefits for Sick Job Seekers: After battling leukemia, man is denied unemployment benefits

Opinion: Why are Washington’s nonprofit health insurers sitting on huge surpluses?

“Gizmo idolatry,” robotic prostatectomy, and real data

Final Thoughts from A Dying Cancer Researcher

Number of uninsured in WA hits 1 million

Drug research routinely suppressed, study authors find

FBI crackdown on unproven stem cell therapies

 

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Can We Afford Personalized Medicine?

Special treatment for ‘high profile’ patients; exasperation for the rest of us

Health Insurers Making Record Profits as Many Postpone Care

People Who Donate Organs For Transplants Can Have Difficulty Getting Insurance

Foundations, Conflicts Of Interest And Drugmakers

Mission Crash: The Intolerable Policy Incoherence in US AIDS Policy, Global and Domestic

 Office of Minority Health Awards Major Project to Support
CCHI’s work on Healthcare Interpreter Certification

WA Governor signs precedent-setting healthcare worker safety laws

Washington is first state in nation to ban toxic pavement sealants

HHS awards $4.9 million to support families of children with special health care needs

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Things are still beyond grim as the work on Washington State’s  budget continues. However, on February 4, there was a more hopeful sign when the  Senate approved its version of the Supplemental Budget, including a provision to continue the Basic Health Program, although in reduced scope, by drawing on the Life Sciences Discovery Fund. The  LSDF was established in 2005 from WA’s share of national tobacco settlement funds.  Both the Governor’s budget and the one previously approved by the House had cut  BHP, along  with the DSHS long-standing  interpreter services program for  Medicaid and CHIP patients  These potentially promising developments however have garnered less attention than another set of proposals in HB 1847 ,which would  to sustain funding for BHP by eliminating tax exemptions for Big Banking,  and sales taxes on elective cosmetic surgery and private jets. 

While advocates regard these developments as positive, the struggle is far from over. The Supplemental budget is now undergoing the reconciliation process by both houses and will needs the Governor’s approval; the Biennial budget  will have its turn next. Both contain deep cuts in virtually every area of life affecting Washingtonians, with the worst cuts affecting the most vulnerable populations, especially immigrants and refugees. WA Budget cuts 2011.

The history of these two programs is of particular note at this critical time.  The original intent of the Master Tobacco Settlement Agreement was to fund health services in the states for those affected by smoking.  At the time, Gov. Gregoire, aware that the state would come into additional funds from that source by 2009, planned a move to combine them with private monies to develop a biotech sector.  In a  2005 commentary prescient of current threat of extinction for the Basic Health Program (which began as a 1987 pilot project and became permanent in 1993) the Seattle Weekly had reported:

It will be controversial because originally the tobacco settlement money was supposed to be used to help states offset the health care costs associated with smoking. In 2003, when Gary Locke floated an idea similar to the Life Science Discovery Fund—he called it Bio21—Senate Majority Leader Brown told Seattle Weekly she didn’t like the idea of using tobacco money for biotechnology. “We are one of the few states that has remained true to using that money for health care,” she said at the time. Expect the debate over the best use of the tobacco money to continue.

As I had written previously, in late October 2010, after the Governor had issued her call for “across the board budget cuts” from every state agency, the LSDF awarded $5 million to a private company engaged in personalized medicine research.  Last week, LSDF awarded $600,000 in commercialization grants to four research projects.

The Interpreter Services program also was created as a result of federal litigation, in this case as a result of a 1991 Consent Decree negotiated with the Office of Civil Rights in response to lawsuits and civil rights complaints filed against DSHS for failing to provide equal access to services for clients with limited English proficiency  By law, in this case the Civil Rights Act of 1964, title VI, recipients of federal funds must not discriminate against program beneficiaries on the basis of race, color, or national origin.  Courts have defined lack of language access as a form of discrimination based on national origin. However, the responsibility to fund language services is ultimately that of providers. Since  techncially Washington funded the DSHS program voluntarily, it is now able to seek to de-fund it, unlike other mandatory programs. But in doing so, the state would also forgo specific federal funds that it has been receiving that have covered 50-75% of the total costs, as the Washington State Coalition for Language Access explains in a fact sheet:  WASCLA DSHS Interpreter Services Talking Points January 2011

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