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Archive for the ‘Assistance’ Category

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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More recent heartening news — literally and figuratively– was the March 31 launch of the “Retire Ronald” campaign by Corporate Accountability International.  CAI began work  in the late ’70s as INFACT ( Infant Formula Action Coalition) , to create global awareness  and action to curb the inappropriate marketing of baby formula in poor countries which caused devastating health and economic effects.  Today the organization campaigns to change harmful corporate practices in many fields. Health continues as a major focus, so mounting concern about the now-global problem of childhood obesity prompted its new Retire Ronald campaign. Fast food, today an international industry, is part of the problem;  McDonald’s business success its emblematic of its pervasive and detrimental reach.   Since its start almost 50 years ago, McDonald’s has utilized an array of multimedia marketing pitches, both overt and subtle, specifically targeting children.  The ubiquitous ads and events, in all their forms,  often feature Ronald in likeness or in person.  Detailed information about the Retire Ronald campaign, including  deconstruction of ads and  backgrounders on promotional  techniques used by McDonald’s , and a 28-page  report Clowning with Kids’ Health: The Case for Ronald McDonald’s Retirement, can be found the CAI website and the group’s Facebook page.  Readers also have the opportunity to sign an online retirement card to convey their messages to McD’s corporate office.

Companies the size of McDonald’s are able to utilize multiple venues and a range of techniques to disseminate their messages to potential customers of all ages: children,  youth, and adults. Of McDonald’s several websites, for example, its corporate site features a special section for students, which touts the many facets of its corporate social responsibility plus information on job and scholarship opportunities. In the FAQ section along with facts on company  operations,  item #14 in the Q & A  presents distorted information about nutrition :

Isn’t it healthier for me to make lunch for my kids rather than buy it at McDonald’s?

Actually, a 4-piece Chicken McNuggets with Apple Dippers and milk contains fewer calories and fat than a homemade grilled cheese sandwich, cup of tomato soup and glass of lemonade.

Not only is the question not answered (and seems to address parents, not students) only a single type of McDonald’s fare is compared to single type of homemade meal, hardly a valid analysis!  Parsing out comparisons between numerous McD items in contrast with a full array of possible home-prepared lunches could be the basis for an excellent lesson plan in independent living classes, for example.

Ronald McDonald has his own website directed at children with interactive online games, and messages informing parents that the activities help kids develop their fine motor skills . The main company site features products, nutrition information and special promotions along with “multicultural marketing” pages targeting at young African-AmericanAsian American ( with sections in Chinese and Korean) and Latino customers, the latter version in Spanish.

Through my own work that spans involvement with Healthy Skepticism ( an NGO which aims to  promote health by countering misleading promotion of medicines) and my background as a nutrition educator and a mom of  children now grown , I was glad to learn of the Retire Ronald campaign.  My interest was further piqued because in the advocacy world too, I’ve been hearing other concerns related to Ronald, that make one wonder just how family-friendly he really is.

For starters, beyond just  problematic promotions,  is the fact that there are McDonald’s restaurants located in hospitals ,including in at least 30 in childrens hospitals around the country.  According to a 2006 study published in Pediatrics, some 30% of  all US hospitals had fast food restaurants located on their premises.  The researchers also found that:

…the presence of a McDonald’s restaurant in a children’s hospital was associated with (1) increased fast food purchasing by parents, (2) the belief that McDonald’s Corporation was a hospital benefactor, and (3) more positive perceptions of the healthiness of McDonald’s food.

And when hospitals try to put words into action with their own health messages to patients and families, by eliminating  fast food , they have faced corporate pushback.  This was the experience of a new CEO at the Cleveland Clinic ,which specializes  in cardiac care, when he tried to break a 10-year lease with McDonald’s.

The company’s clown mascot is further  known around the world through his namesake Ronald McDonald House Charities . RMHC sponsors Ronald McDonald Houses, which meet the vital lodging needs of  families of seriously ill children being treated at hospitals outside of their home communities. Reviews of  company history have revealed that McDonald’s got involved with charitable work not purely out of altruism as is commonly believed, but to enhance its own image and thus its bottom line,  through branding opportunities . According to research cited by CAI ( see pages 5 and 27 of the full report)  Fred Turner, former McD’s CEO and Chairman once told an interviewer:

We got into it [ charitable work] for very selfish reasons,  It was an inexpensive, imaginative way of getting your name before the public and building a reputation to offset the image of selling fifteen cent hamburgers. It was probably ninety-nine percent commercial.

RMH facilities are lodge-style  homes-away-from-home , usually situated adjacent to hospitals, in cities around the globe. The Houses in the US typically charge $10-$25 per night and RMHC Global has a universal access policy as part of its mission, stating that:

…..families either stay at no cost or are asked to make a donation up to $25 per day, depending on the house. The RMHC Global Policy is that families are never turned away; if its not possible to pay, the fee is waived.

There is a great need for this service, as in addition to the medical expenses, families also face enormous uncovered non-medical costs just at the time when income is decreased due to the sick child’s hospitalization and care needs.  With  hospital stays typically lasting  from weeks to many months, even paying for  subsidized temporary lodging ,while also paying rent or a mortgage back home, may be impossible.  As illustration of the  great demand  for lodging support are the facts that many RMHs keep waiting lists, and that many like the RMH in San Diego, report having had to turn away hundreds of families each year due to lack of space.

RMHC is  a 501(c)3, tax-exempt US charitable organization, separate from the McDonald’s Corporation, it’s principal corporate sponsor.  The RM Houses are run by local chapters of the  RMHC, and each chapter is incorporated as an independent  charitable organization in its home state, and conducts local fundraising, including at McDonald’s stores . For more about the links between McDonald’s and RMHC, see Our Relationship with McDonald’s.

There is the irony  of course that this essential healthcare support service is so heavily supported by the sales and promotion of unhealthy food.  But there are other issues too about the conditional welcome, or even exclusion, that some families may encounter at individual RMHC  facilities, and how RMH employees may be treated.

There seems to be some variability in the universal access policy, although the vast majority of the RMHC chapter websites that I reviewed– including  Springfield, MOPhiladelphia, Minneapolis, SeattleAustin, TXClevelandLos Angeles, just to name a few– explicitly state that no one is ever turned away because of inability to pay.  In New York City however, this does not seem to be the case, as their RMH website says only that There is a $35.00 fee per night, per room to stay at Ronald McDonald House of New York, and offers no information on flexibilities.

While Salt Lake City  RMH too has the open financial policy, published on its website is the stipulation that “For those who do not speak English an interpreter will need to accompany them on their first visit“. I’ve heard anecdotally that telephonic interpreting is not acceptable , although this service is commonly utilized by hospitals to complement live interpreter services.   Especially for families arriving after business hours, this requirement can be impossible to meet;  it resonates as mean-spirited and  exclusionary.  The Birmingham AL  RMH  website states that families can bring a friend or family member who can translate…..if you do not speak English.  (FYI,  interpretation refers to spoken or signed language, while translation is exclusively of written work; these terms are frequently confused). While I’m not an attorney, I do know that  these are the kind of policies which need to be reviewed for compliance with civil rights laws pertaining to  public accommodations.

The  validity of the warm, fuzzy, caring  attitude associated with Ronald in all his manifestations has at times been the subject of headlines regarding issues that have arisen at individual  RMHs  including:

  • a 2005 case in Baltimore, where a family of a child about to undergo heart surgery, was initially turned away by the facility because the patient’s blind mother was accompanied by a guide dog, in supposed violation of a RMH  “no pets” rule .
  • a 2007 case in Houston, where the mother of an infant who had just undergone surgery for a brain tumor, was admonished for nursing him  in a common area of the RMH, with implications made that if family wished to continue their stay , breastfeeding should be done only in the family bedroom.
  • a 2009 case in Miami, where the former assistant manager of RMH of South Florida has filed a lawsuit alleging violation of labor laws as she was often required to work off the clock, and did not receive  $20,000 in overtime  pay for  her customary 70-hour work weeks.

It’s important to know too that sponsorships by major corporations, which come product promotion ties, are not the only way to meet the housing needs of sick kids and their families. All around the country (and the world too) there are grassroots endeavors, by both organizations and individuals,  providing patient lodging. To learn more , visit the website of the National Association of Hospitality Houses.

Retiring Ronald could be a positive step to improving the health and well-being of our children, one meal at a time.

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Help for Haiti

Here are links for info and specialized resources of note:

Haiti Earthquake Relief page on Snopes.com

Snopes  evaluates urban legends, rumors ,and messages that especially are rife on the Internet. This is a reliable resource to help separate fact from fiction. Unfortunately scam artists see disasters as opportunities.

Several organizations are seeking professional Kreyol and French interpreters and translators as volunteers to work in Haiti and remotely. For details, plus  information on language pairs needed, contact the National Association of Judiciary Interpreters and Translators (working with the American Red Cross) and Translators Without Borders (working  with Doctors Without Borders).  A new networking group, Interpreters and Translators for Haiti has set up a Facebook page for communication.

The Hesperian Foundation, a non-profit publisher of materials for community-based health care, has Haitian Creole editions of the book Where There is No Doctor, Sanitation and Cleanliness booklet ,and Where Women Have No Doctor in PDF form, available to download for free on their website.  A Creole print edition of Where There is No Doctor is available for purchase.

Idealist.org continues to offer solid information, insights, and networking on rational and appropriate ways to help the people of Haiti. See the blog for the latest, including Helping Haiti: Things to Consider.


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