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Archive for the ‘Assistance’ Category

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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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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Recent developments in Washington and neighboring Oregon are reminders of the clout and lobbying power of Big Pharma on the local level.

Seattle City Councilmember Tom Rasmussen announced that he was working to implement a  discounted prescription drug program for Seattlites , a program of the National League of Cities.  At first glance this might seem like a boon most of us, cash-strapped and increasingly uninsured and underinsured, but in reality the plan is not needed, won’t offer much in the way of bargains, and is linked to a questionable PBM. With all due respect to Rasmussen, who undoubtedly has good intentions , he seems unaware that we already have a drug discount program available at no charge to all state residents, the Washington Prescription Drug Program , which offers discounts up to 60% on generics and 20% on branded drugs, while the NLC program  offers maximum discounts up to 23% of full retail prices.  Another concern is that the NLC card is an offering of CVS Caremark, the mega-PBM which has earned itself notoriety for  unethical business practices, including overcharging government employee health plans ( including the federal plan) for Rx medicines and drug-switching on scripts. The Seattle-only program is due to start next month, so now is a good time to weigh in with Rasmussen and his fellow City Councilmembers , as well as with Mayor Mike McGinn on the issue.  In addition to helping to increase awareness of the WPDP, our city elected officials could really offer a public service by creating a drug price comparison tool that surveys Seattle pharmacies.

And in the Washington Legislature, among several bills dealing with prescription drugs ( look for my comments in the future), for the third year in a row we saw  Drug Companies Fight Take-Back Program for Unused Medicine. They claim that take-back programs, which they would be required to help pay for, would do little to stop  abuse of prescription drugs and that environmental concerns about trashing meds are essentially bogus. Take Back Your Meds, a group of over 260 health organizations, police, drugstores, local governments, environmental groups and concerned individuals vows to keep up the fight.

In Oregon, a legislative defeat with direct negative impact there and for partner WA in the Northwest  Drug Purchasing Consortium , pharma and insurance industry muscle united to make sure that  Oregon Prescription Drug Program Bill Dies a Second Death. SB 1577 would have required all state agencies to purchase medicines for beneficiaries through the Oregon Prescription Drug Program, reversing the current optional  status.  When the OPDP and the WPDP were created in 2005, they formed the Northwest Prescription Drug Purchasing Consortium to achieve better prices through pooled volume purchasing but left participation optional for state agencies. In both states, for example,  the Dept. of Corrections does not participate.  And with efforts to control Rx costs stymied, we are seeing scenarios such as this year’s state budget proposal in Washington to eliminate completely prescription drug coverage for adults in the Medicaid program, only now with some hope of possible mitigation if competitive bidding for generic drugs is approved by the Legislature now in Special Session.

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Now more so that ever, learning of positive developments and new efforts of those working to make a difference, helps me to keep going . I share here with you some news of significance at the local, state,  and national levels.

In Washington State:

State lifts three-visit ER limit for poor patients

Workers’ wellness saving jobs in parks, policing, transit

Poor people win: Judge allows 11,000 to rejoin Basic Health

In New York State:

Medicaid team passes four sets of reform proposals, including Safe Rx  to “Promote Language Accessible Prescriptions”

Governor Cuomo Issues Executive Order to Improve Access to State Services for Non-English Speakers

Nationally:

One Million Young Adults Gain Health Insurance in 2011 Because of the Affordable Care Act

For kids in foster care, law now requires that states create protocols and actively monitor the use of psychotropic medications

Launch of Pharmacists United for Truth and Transparency

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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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The article Efforts to Undermine Public Health:  Health Advocacy Organizations and the Pharmaceutical Industry: An Analysis of Disclosure Practices in the Jan.13 issue of  American Journal of Public Health focuses some much-needed attention on a serious and growing problem , which directly impacts the creation of rational health policy.  It’s also good to see the wide media attention being given to the study, which has been flagged by venues across the spectrum, including  healthcare sector analysis and investigative reporting blogs to mainstream  business media and news reports.

It’s been interesting too,but not surprising to see, that a number of people are also sending identical comments to multiple venues  which covered the story, some to decry the findings of the study, or  to make  off-topic remarks. The comments from the National Health Council , for example emphasized that it has a policy of requiring member groups to have internal disclosure policies regarding industry support received. The NHC itself  has a listing of funding received in 2009 from its  many “Corporate Partners.”   However, just like with payments to physicians, merely acknowledging industry funding doesn’t mean that it does not influence the actions of the recipient, nor not create conflicts of interest.  Unlike the significant body of research on the topic of influences on the prescribing practices of doctors (which have found that while many  state that they themselves are not influenced by pharma gifts and perks, they believe that their colleagues are) , much less attention has been paid in the US to the phenomenon of  industry support of HAGs and its impact on public policy.

Based on personal observations both as  patient and a healthcare professional , I believe that the “don’t bite the hand that feeds you”  phenomenon  relating to HAGs, contributes to  the present inaction on getting states and federal government to do something about the exorbitant and escalating price of medicines as a public health measure. Until the electorate actively protests what is going on, the lobbying power of the biopharma industry  on Congress will remain in effect. While it is becoming more common to find  media pieces highlighting  complaints by provider and  disease groups  about the price of Rx drugs, along with the unaffordable co-pays for those insured, almost never do we hear patient advocacy groups demand that something be done about the situation.  The only logical conclusions that seemingly can be made about the scenario is either that the public is incredibility naive about how the pharmaceutical  and insurance  industries  function, or else HAGs have been so influenced by their pharma benefactors that recipients actually believe that the prices are justified by R & D costs, and that patient assistance programs ( PAPs) are a genuine access solution.  Likely it’s some combination of factors.  More about this later.

Since a requirement that  HAGs disclose industry funding was dropped from Sunshine Act provisions incorporated in the ACA, it’s time start to address the problem by pressing the IRS to require that all 501(c)3 charities disclose their funders and amounts received from each. At the same time, much more public education  is needed about  “the ties that bind”, to paraphrase the title of a 1999  report on the topic  by Health Action International.

In the meantime, those interested in starting to research  industry links to patient and disease groups will find the following resources of independent organizations helpful:

Essential Action
Pharmafiles database: Patient and Health Groups and Their Corporate Funders
Patients, Patents and the Pharmaceutical Industry

Knowledge Ecology International
Medical professional and patient group funding by drug and medical device companies

Healthy Skepticism


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The end of the year with its annual holidays found many  of us here in Washington State feeling anything but in a festive mood, given the imminent decimation of core health and human services, as part of  the Governor’s proposal for balancing of the state’s  budget in the new year and for the biennium.  On September 13th, Governor Gregoire’s Executive Order 10-04 instructed all state agencies to make reductions in their allotments from the State General fund in order to meet the requirement for a balanced  budget. On September 29, DSHS issued its initial plan of how the 6.3% across-the-board budget cuts would be applied to Department programs to meet this mandate. The proposed cuts were aimed at every program and service (included some entirely state-funded and other linked to Medicaid)  not technically defined as “mandatory,” affecting the state’s most vulnerable populations in all age-groups from pre-cradle to grave, and including  primary care delivered at community health centers.

By December, a supplemental budget proposal with even worse news was issued, containing further  proposals for achieving the needed $4 billion in savings to balance the budget. The drastic cuts to almost every aspect of civic life, was driven by outcomes of  ballot measures  from the November elections, which dashed any hopes even of short-term new revenue generation  from snack sales, rejection of a first-ever state income tax to have been levied only on the wealthiest among us, and hamstrung future legislative efforts to raise taxes with the 2/3 majority approval stipulation.  By December 30, the Governor released the latest list of planned budget cuts,and the timeline for their elimination. While some of the worst of the cuts have been staved off or delayed temporarily, it still remains to be seen whether the remaining services will be funded, even in vastly reduced mode, and how many human beings affected by the cuts will even survive.

While at this stage in my life nothing surprises me any more, the discrepancy between what is happening to these most basic of services and the treatment of the high-profile, socially attractive high tech sector by state government should be a wake up call to all of us who value a decent society. While the majority of Washingtonians have not misbehaved, it seems like the most vulnerable among us are being singled out for punishment.

State Dollars > Private Venture

During exactly same time period that the budget cuts were first announced in October, another state agency, the Life Sciences Discovery Fund, gave a grant of $5 million to a private, for-profit business, the Omeros Corporation, a Seattle biopharmaceutical company, for  research into speculative personalized medicines. The grant to Omeros was rolled into a package deal for the firm, that included $25M from Paul Allen’s Vulcan Capital. Even Xconomy: Seattle‘s biotech reporter Luke Timmerman expressed great surprise at this development in his Dec. 14 article entitled Life Sciences Discovery Fund Debunks Perceptions with Omeros Deal, Shows State Can Bankroll Companies. If the research ever pans out, then there is the possibility of financial returns to the state at some unknown time in the future.

A bit of background: Washington’s Life Sciences Discovery Fund was established by the Legislature in 2005 to disburse the tobacco settlement funds allocated to the state. While the the fund originally had been allocated $350M for a 10-year period, when the State’s budget crisis threatened to shut down the program in 2009, it survived with a budget cut of 41% or $39M in funds for FYs 2009-2011. The LSDF’s  stated mission is as follows:

The Life Sciences Discovery Fund supports innovative research in Washington state to promote life sciences competitiveness, enhance economic vitality, and improve health and health care.

which the  program website further explains as intending to “foster growth of the state’s life sciences sector and improve the health and economic wellbeing of its residents.”

But given the crisis situation we now face–in context of course of the ongoing national recession–emergency measures are needed.  It hardly seems the time for state government to be investing in private companies, purely ethical issues aside for the moment. Obviously, it’s going to take more than redirecting the “mere” $5M given by the LSDF to a private venture to save public health services in Washington State, but those funds certainly could have turned things around for a good number of the axed programs, such as the Basic Health Program insurance plan and so many Medicaid services.  While research is important, without access to care, medical innovations are meaningless.  What good is research, if there is no safety net? Given the LSDF’s mission, it should be part of the logical solution needed  now: making sure that all Washingtonians can benefit from the medical knowledge available today. And the state government can take a leadership role too in education on the need for investment in our human capital. Despite laments over the election outcomes,and grim prognostics, the official ChooseWashington.com website continues to highlight the array of attractive tax incentives, some of which I had commented on previously, for certain types of companies to set up shop here, along with the absence of a personal income tax.

Another part of the Governor’s plan to balance the budget, announced December 14, is to eliminate Boards and Commissions. No mention was made in this announcement, however, about the status of  a brand-new board, the Global Health Technologies Competitiveness Board established in July 2010, after SB 6675 Creating the Washington global health technologies and product development competitiveness program and allowing certain tax credits for program contributions, was approved by the Legislature and signed into law by Gov. Gregoire. Per RCW 43.374.010, among the Board’s charges are seeking funding from the private sector, foundations, and the federal government in order to issue grants to local enterprises …to stimulate our economy and foster job creation in the emerging field of global health while improving the health of people in our state and the world. The program is required to be administered by a 501(c)6 tax-exempt nonprofit organization, which contracts with the Dept. of Commerce for administrative services.

The Global Health Technologies Competitiveness Program (GHTCP) was awarded $1M by the Legislature (evidently not subject to the budget cuts) and issued its first RFP in mid-November, with awards expected to be announced early in the new year, along with a second RFP announcement, according to the Washington Global Health Alliance.

Think Globally, Act Locally ?

These new developments beg the question of just exactly what these specific state-funded programs are doing to improve the health  of Washington residents in the here and now. I write these words from the perspective of understanding full well how domestic and  international health are inextricably linked, whether regarding diseases rapidly transcending national borders or concerning the impact of international trade agreements on availability of medicines for US Medicaid programs, just to name a few examples. I myself am alive today partly as a result of medical advances developed here in Seattle, and I am also directly involved with both local and global health equity work, which makes me even more appalled at what is going on. Global health has been described as Seattle’s “next hot industry,” but few are the public voices applying critical thinking skills to analyze what this actually means for local folks. One of the exceptions is that of Seattle journalist Tom Paulson, who now offers insights on his Humanosphere blogsuch as a November 2010 story on a still-vague, 5-year  $1M  Swedish Medical Center pilot project called Global to Local targeting two low-income communities in  South King County.  Tom pointed out the irony  of this program being rolled out at the very same time that well-established and proven-effective, public health services are being slashed. According to the article, G2L is based on a concept that the “best practices” used by local actors in overseas health programs can be applied here at home too, while structural reasons for domestic health and healthcare inequalities are not addressed. And another observer, Steve Gloyd, MD of Health Alliance International and the UW Dept. of Global Health, has opined that there can be an upside to calling global health an “industry”:

“Maybe using the word will shock people into recognizing that when a local biotech firm says it is working on a vaccine to help people in Africa, some will see it is actually just trying to make a few people in Seattle rich.”

Next year, a new nonprofit called Global Health Nexus will commemorate the 50th anniversary of the Seattle World’s Fair with a major conference and exhibition showcasing the region’s global-health advancements. One has to wonder if anyone working to improve health at the local level will be invited to present, or if we’ll be able to afford the registration fees. Perhaps advocates can submit an abstract for a session there featuring real-life Washingtonians sharing first-hand accounts of the outcomes of state budget cuts on preventable health problems, such as  a child who has  been experiencing asthma attacks since elimination of the Children’s Health Program; an adult with diabetes who had to get their leg amputated due to lack of non-emergency podiatry care;  or the relative of a patient who died due to a wrong diagnosis resulting from lack of a medical interpreter;  or we could show  videos of overflowing ERs full of patients bumped from the Basic Health Program and unable to be seen at community clinics. Then maybe we could pass the hat among the rich and famous to take to up a collection for local health.

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That might be the conclusion drawn by readers of a recent article in Bloomberg Businessweek. Recession Causing Cancer Patients to Quit Life-Extending Drugs which was the August 4 feature in  the Executive Health column. This news story earned billing as  the Outrage of the Week in  NLARx News from the National Legislative Association on Prescription Drug Prices.  The original article discusses the dire plight of patients  in California with GIST ( gastrointestinal stromal tumor) who lost their jobs and hence insurance, and  are no longer able to afford the Gleevec which has been keeping them alive to the tune of $5000/month.  Or for those who still have insurance, the unaffordable cost of the co-pays, often 50-70% of the Rx retail cost, in accordance with the now-common tiered formulary systems.  Equally outrageous however is that the article completely misses the boat when discussing remedies for the situation.  Author Amanda Gardner describes how patient assistance programs (PAPs) may be available temporarily for some patients as a stop-gap measure, and posits how things should get better  as the provisions of  the Affordable Care Act  roll out.  In the meantime, however,  the very survival of many of the patients  described is in jeopardy  with no solution in sight, if we are to believe such spokespeople as  Stepehn Finan, senior policy director of the American Cancer Society’s Cancer Action Network , who was quoted stating that [the PAPs]

…….. are the only real options at this point for people who are pressed to afford their prescription costs.

Yet the urgent need for something to be done about the exorbitant price of drugs  is not mentioned in this article. Unaffordable medicines are not inevitable. Real remedies exist such as allowing CMS to negotiate for drug prices like the VA does,  instituting price controls, and allowing  prompt development of generics of the most costly drugs. The grip of Big Biopharma  lobbyists on Congress will remain strong if the public continues to believe that nothing can be done.

For the record, the vast majority of funding for the research that led to creation of Gleevec came from government coffers and nonprofit sector sources, and drug’s first US patent expires in 2015.

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From Pharmalot, May 24, 2010:

Wyeth Marketing Targeted Blacks Illegally: Lawsuit

A pair of former hospital sales reps filed a whistleblower suit alleging Wyeth, which is now owned by Pfizer, illegally promoted its Rapamune kidney transplant drug for use with other organs and targeted African-Americans, even though this is a high-risk patient group, according to the product labeling ………..

<snip>

“Despite limited data on high-risk patients, Wyeth targeted transplant centers that catered primarily to African-American patients, typically in urban areas……………  Wyeth also instructed reps to use journal articles, including one published in Transplantion in July 2002 to off-label market Rapamune to African-Americans for combinations that were not approved by the FDA…………….

From Oncology NEWS International, May 13, 2010:

Global cost-sharing programs for pricey drugs fall short

Survey results indicate patient access schemes in the UK and the U.S. need refinement.

With the cost of cancer drugs increasing at a rate that is generally thought to be unsustainable, many countries are faced with the difficult question of how to ensure access to these drugs without breaking the financial resources of individuals and systems paying for them……….

From BBC News,  June 3, 2010

Cancer fund cash ‘will run out’

Making more cancer drugs available could cost far more than government estimates according to a BBC investigation.The government has allowed for a £200m cancer drug fund to pay for more cancer treatments from next year. But the cost could rise to £600m based on figures from drug manufacturers and the National Institute for Clinical Excellence (NICE).

<snip>

Health economist Professor Alan Maynard……………..said many of the cancer drugs were portrayed as wonder drugs when they only extend a patient’s life by three to four months.”The pharmaceutical companies’ PR has been first class.”

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These news items have as yet not received much attention, but highlight health issues of concern:

Asda to sell cancer drugs at cost price

Asda is to sell cancer drugs on a not-for-profit basis while thousands of NHS patients continue to be denied medicines that are deemed too expensive.

The supermarket giant called on other pharmacists to follow its lead and lower the price of all cancer drugs that are prescribed privately, to give patients access to drugs that are not always available on the NHS.

The move could save cancer patients thousands of pounds on the cost of treatments that may extend their lives by weeks, months or years, but which have been judged to be too expensive to be routinely available for free from the health service.

The move comes as the Government restated a pledge to make more expensive treatments available to NHS patients from April next year, with a £200million fund to pay for cancer drugs………..

What is not mentioned in the article is urgent need for price controls on medicines.  If the NHS  is going to be successful in implementing the new cancer drugs fund, it’s going to need to negotiate prices with the biopharmas.  No health system public or private, nor any insurer, employer, or individual has endless resources, although the drug companies typically act like purchasers do.  And for the most part , advocacy campaigns by patient and disease groups, no matter their location, seem to focus only on demands for drugs, not that  genuinely useful drugs be made available by being affordable.  With so many patient groups receiving industry funding, this is no surprise, but it certainly is not a sustainable position for resolving the access problems.  While the conflict-of-interest issue may have often garnered more attention in the UK than in the US,  it’s a growing, worldwide phenomenon.  And even in the UK, most ordinary folks simply cannot afford to pay out of pocket for drugs with 5- and 6- figure annual costs, nor can the NHS if it is to continue to fulfill its mission.

Asda is a large UK supermarket chain, part of the Walmart group.  Earlier this year, Asda pharmacies started selling specialty prescription drugs needed for IVF treatments, which likewise were not being covered by the NHS.

Also relevant to cancer treatment is a news item from the US:

Altamonte Springs stem cell company scheduled for sale at debtors auction

A judge has ordered Cryobanks International, an Altamonte Springs company that stores stem cells in super-cold freezers, to either repay a California businessman the $3.5 million he loaned it or be sold at a courthouse auction in two weeks.

Company President John R. Edwards, M.D., would not predict Wednesday what would happen to the company or who would wind up owning it.

Of the auction, he said, “I don’t know if anything can be done to stop it.”

But he stressed that the company’s stem cells would remain safe. From 5,000 to 10,000 units are currently housed in liquid-nitrogen freezers at the company’s Altamonte Springs office…………

The type of stem cells referred to are those from the umbilical cord blood of newborns, which now can be used  in the same way as bone marrow and peripheral blood stem cells, for transplantation  to replace the malfunctioning immune systems of patients with blood cancers and other diseases.  Most of the customers of Cryobanks International are private individuals who have paid to store the cord blood of their newborns as supposed “biological insurance” against many  future ills, often wooed by emotional marketing of an industry that is still unregulated in the US. Most medical groups worldwide, including the American Academy of Pediatrics, recommend against private cord blood banking, and stress the tremendous unmet need for donation to public banking programs to serve today’s patients. Because of the small volume of blood from the umbilical cord, most such transplants are done for children.

And therein lies the public health concern about the future of Cryobanks International.   In addition to its private clients, since late 2005 the company has been a network member of  BeThe Match (formerly called the National Marrow Donor Program or NMDP) , the federal contractee which operates the US national public cord blood registry. Currently it’s possible to donate cord blood only in a handful of states, and Cryobanks International is listed as offering a unique “mail-in” option for interested expectant parents living everywhere else. Information does not seem to be readily available about the federal subcontract, nor on how many cord blood units have been collected by Cryobanks International for the NMDP. (It’s also not clear why an exact count of  stored CBUs held by Cryobanks did not seem to be available for the news story.)  CI states it has a division in India as well, with an India-specific website listing multiple sites nationwide.

This is not the first time that questions and controversy  have swirled around  Cryobanks International. In 2003, CI was identified as the supplier of cord blood to an Atlanta regenerative medicine clinic raided and shut down by the FDA. Run by an osteopath named Mitchell  Ghen, the clinic offered unapproved treatments  to desperate patients with diseases like ALS. Ghen offered expensive therapies using cord blood stem cells, but it is not clear if these were actual blood stem cell transplants.  CI cut off supplies of cord blood units (CBUs) to Ghen, who then relocated his clinic to Belize ,offering the same treatments– source of the CBUs unknown–and generating the same concerns.

Subsequently, media outlets including the New York Times reported on other business  activities involving CI.  In 2005, CI stated it was negotiating a merger with a new cord blood company named Biostem, which previously ran parking lots, provided Internet services, and operated a small mining company in Washington state. According to the Times, Biostem was being promoted to potential investors through dubious advertising pitches for so-called penny stocks. According to SEC records, the merger was abandoned in 2007.

I’ll be writing more soon about the complex field of blood and marrow transplantation and other key policy issues.  In the meantime, the public needs solid information about what’s going on with Cryobanks International and the Be the Match program.  Stay tuned as I endeavor to learn more.

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