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Archive for the ‘Patient groups’ Category

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

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

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

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

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

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

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

Glivec400mg

 

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

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

Prices Soaring for Specialty Drugs, Researchers Find

Generic drug prices skyrocket in past year

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

Pharmacists Report Soaring Generic Drug Purchasing Prices Impacting Patients, Pharmacies

New strategies needed to curb specialty drug costs

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

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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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