March 15, 2018
Yesterday, March 14, 2018, Kayla Gu, a medical student at UCLA, spoke before the University of California (UC) Board of Regents on behalf of Universities Allied for Essential Medicines (UAEM), Knowledge Ecology International (KEI) and the Union for Affordable Cancer Treatment (UACT). This was the second time a coalition of organizations including UC students had asked the University of California to drop its pursuit of a patent on the prostate cancer drug enzalutamide (brand name Xtandi) in India. Prior requests made on behalf of the coalition have been formally rejected or ignored.
Ms Gu’s statement is included below:
“As medical students at UCLA and future physicians, we feel almost personally responsible. When we first came to medical school, one of the first things we learned was that, as future providers, we need to not only master medical knowledge, but also take on the social responsibility to promote health delivery and access. At our student-run homeless clinic, we work in underserved communities to deliver medical services to those who can’t afford healthcare, all the while the prices for essential drugs rapidly rise and our patients are being gouged by these high price tags. Xtandi is one such drug, priced at $129,000, that has become out of reach for patients here and abroad.
In 2009, the University of California adopted licensing guidelines that states that we will “ensure an appropriate return of taxpayer investments in University Research”. Xtandi is a drug developed on UCLA’s campus with public funding from the National Institutes of Health and Department of Defense. It is now sold at an exorbitant price both in the United States and abroad. We would like to ask the Board if they will take action to uphold these licensing guidelines and ensure that our patients’ and the public’s interests and investment are protected and rewarded.
The licensing guidelines recognize that “the ability of underprivileged populations to access and afford these technologies may be constrained by price or distribution” and the University of California system has committed to “uphold our public benefit mission” and “consider such public benefit and broad societal needs when developing licensing strategies for such technologies”. While Xtandi has already been licensed to the pharmaceutical industry without such protections for pricing for patients worldwide, we urge UCLA, our institution, to not further restrict access by continuing to pursue this patent claim in India on the behalf of the companies the drug had been licensed to. As a public institution with multiple statements from the Health System and UCLA leadership on protecting health access, we hope that the University will carry out these statements by dropping this patent claim. Otherwise, the teaching we’ve been receiving in our classrooms to act on our patients’ best interests is simply words, not action.
As proud UCLA students, we believe that we are acting on our conscience. We urge UCLA to do the same by not further pursuing this patent claim in India and preventing patients from being able to access a more affordable prostate cancer medication”.
Due to the continued lack of action being taken by the Board of Regents, UAEM, KEI and UACT are now launching a sign on letter calling for students and alumni of the UCLA community along with partner organizations, to fight on behalf of the patients that cannot afford these taxpayer-funded drugs, rather than fight a legal battle on behalf of the pharmaceutical industry.
To support the campaign to ask UCLA to drop the patent claim and #TakeBackXtandi sign here: https://actionnetwork.org/petitions/students-demand-ucla-protect-access-to-drug
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Students from Universities Allied for Essential Medicines (UAEM) are outraged by the current position of the United States delegation to the World Health Organization (WHO) in relation to the United Nations High Level Panel (UNHLP). A recent Freedom of Information Act (FOIA) response released by non-profit organization Knowledge Ecology International (KEI) revealed that the WHO opposed including the UNHLP report on access to medicines in the meeting agenda of the WHO Executive Board (EB), mirroring the firm stance of the US.
On the 12th September 2016, India proposed to include the UNHLP in the Executive Board agenda, supported by the 11 members of the WHO South East Asia region as well as Brazil, Iran and South Africa. However, during the meeting of the six WHO Executive Board Bureau officers on September 27th where the US delegation head acted as Vice-chairman, the WHO opposed India’s request to include the UNHLP report in the agenda.
“Since its publication, the US has tried to dismiss the recommendations of the UNHLP report. Should WHO Members fail to be given a meaningful opportunity to discuss the report’s recommendations, they would effectively be undermining their own work.” said Chloe Hogg of McGill University and UAEM North America student leader.
Despite discussions spanning more than a decade, action has been slow and insufficient to mitigate today’s challenges, which have contributed to high drug prices and a lack of new drugs in vital areas including antimicrobial resistance. That the WHO agreed to take the UNHLP off the agenda contradicts its own calls for “increased transparency in biomedical research,” as well as its statement that the “WHO considers equitable access to safe and affordable medicines as vital.”
UAEM calls upon Member States to look beyond the undue influence of the Unites States and continue to collaborate towards ensuring global equitable access to medicines. It is the hope of UAEM members that this Wednesday March 8th, the UN Human Rights Council Panel meeting on the topic will serve as a productive discussion of the UNHLP Report that will lead to concrete steps forward for global access to medicines.
Public Health Groups Welcome Johns Hopkins University and Medicines Patent Pool Agreement for Development of Promising New TB Drug
While deal marks a critical step in the fight against TB, health groups warn that it lacks safeguards that would ensure worldwide affordability for sutezolid
WASHINGTON, JANUARY 24, 2017—Public health groups, including Universities Allied for Essential Medicines (UAEM), Doctors Without Borders/Médecins Sans Frontières’ (MSF) Access Campaign, Treatment Action Group (TAG), the Global TB Community Advisory Board (TB CAB) and Public Citizen, welcomed today’s announcement by Johns Hopkins University (JHU) and the Medicines Patent Pool (MPP) of an agreement that could expedite the research and development of a promising tuberculosis drug and lead to improved treatment options for people living with TB.
JHU holds several patents for the drug, sutezolid, and has agreed to a license deal with the MPP. The license would enable open non-exclusive licenses with multiple drug developers—including product development organizations, companies and governments—to conduct research and develop drug combinations that include sutezolid. It marks the first such open license for a TB drug held by an American university, and the first open license for a TB drug through the MPP. The MPP, an organization funded by UNITAID, has a mandate to increase innovation and access to drugs through voluntary patent licensing.
“This is a significant achievement after more than two years of advocacy stemming from a UAEM student-led petition brought forward by this group,” said Merith Basey, executive director for UAEM North America. “We commend JHU for shifting its stance to prioritize a public health-driven path for the development of this lifesaving drug, and we call on similar leading universities to leverage their significant role in ensuring future access and affordability of medicines such as this one for people worldwide.”
Sutezolid has shown promise in Phase Ila clinical trials, but research stalled for several years while Pfizer held rights on the drug. Since 2013, when Pfizer signed an exclusive license with Sequella, a biotech company, no new studies of sutezolid have been successfully conducted. The primary patent on sutezolid expired in 2014, but Pfizer, Sequella and JHU still hold secondary patents and clinical data on the drug.
Current TB regimens require combinations of drugs to successfully treat TB; JHU’s licensing deal with the MPP would allow for open research on drug combinations that include sutezolid, which is part of the oxazolidinone class.
Groups such as UAEM, MSF’s Access Campaign, TAG, TB CAB, Public Citizen and JHU students and alumni have, for years, called on JHU to license sutezolid as broadly as possible and with a public health approach.
While the JHU and MPP agreement is a major step forward, these groups are concerned that the deal contains no strong safeguards to ensure that any treatments developed will be made affordable for all the people who need them.
“This agreement has the potential to greatly improve current treatment options, but it can only be truly effective if the treatments created are made accessible to people living with TB everywhere,” said Judit Rius Sanjuan, US manager & legal policy adviser at MSF’s Access Campaign.
“Strong pricing and access safeguards should be a key component of any licensing agreement put together by the MPP. Without them, people in urgent need of new TB treatments will remain at the mercy of whatever group or company acquires a sublicense and its definition of affordability, which is often very different from what we as a community would consider affordable and changes arbitrarily depending on country income status,” said Wim Vandevelde, chair of the TB CAB.
Public health groups are advocating for a single affordable global price for any treatment brought to market through this deal. “We are putting drugmakers on alert, including the first that will benefit from this agreement,” said Peter Maybarduk, access to medicines director at Public Citizen. “We will hold you accountable to a global definition, our definition of affordability. Patients everywhere, including here in the United States, need to have access to this treatment.”
They are also calling on Pfizer and Sequella to act in the interest of public health. “We urge Pfizer and Sequella to provide open access to all existing data on sutezolid,” said Lindsay McKenna, senior TB/HIV project officer at TAG. “These data are critical to expediting sutezolid’s development. Without them, researchers will have to redo studies, wasting precious resources and time.”
TB is the leading infectious disease cause of death globally, and new medicines to treat drug-resistant strains of TB are urgently needed. Current treatments for drug-resistant TB (DR-TB) can last up to two years and include up to eight months of daily injections. Even when patients are able to tolerate these grueling and often toxic regimens, fewer than half of those treated are cured. The development of new TB drugs like sutezolid is critical to the advancement of safer and more effective TB treatment regimens. TB is treated with regimens rather than a single medicine.
Sutezolid marks the first drug that, if developed, could use the 3P Project approach, which is an alternative way designed by MSF and others to fund and incentivize research and development for TB regimens. 3P addresses some of the shortcomings of the current drug development landscape and aims to ensure the resulting treatments are affordable and accessible to all by de-linking R&D costs from prices and sales.
About UAEM: Universities Allied for Essential Medicines is a global grassroots movement of university students and academics organizing for public control over medicine and its pricing to ensure that publicly-funded medical research meets the needs of people everywhere. UAEM seeks to: 1) Promote access to medicines for people in developing countries by changing norms and practices around university patenting and licensing; 2) Ensure that university medical research meets the needs of the majority of the world’s population; 3) Empower students to respond to the access and innovation crises. Find out more at http://uaem.org/
About MSF: Doctors Without Borders, an international medical humanitarian organization, has been fighting TB for over 30 years and is now one of the biggest non-government providers of TB care worldwide. MSF currently treats this infectious disease in 24 countries, including India, Central African Republic, South Africa and Uzbekistan.
About TB CAB: The Global Tuberculosis Community Advisory Board is a group of strong, research-literate community activists from HIV and TB networks around the world. The TB CAB works in an advisory capacity to researchers and product developers conducting trials of new TB drugs and diagnostic technologies, and provides input on study designs, early access, regulatory approval, post marketing, and implementation strategies.
About TAG: Treatment Action Group is an independent AIDS research and policy think tank fighting for better treatment, a vaccine, and a cure for AIDS and its two major coinfections, tuberculosis and hepatitis C virus. We are science-based treatment activists working to expand and accelerate vital research and effective community engagement with research and policy institutions.
About Public Citizen: Public Citizen is a consumer advocacy organization with more than 400,000 members and supporters and a forty-five year history representing the public interest before congress, federal agencies and the courts. Topics of organizational focus include trade, environment, money in politics and prescription drug access, safety and efficacy, among others.
FOR IMMEDIATE RELEASE:
STUDENTS AND FUTURE DOCTORS CHALLENGE APPOINTMENT OF REP. PRICE
Washington, DC: A decade ago, a group of student activists founded the non-profit organization Universities Allied for Essential Medicines (UAEM) to advocate through academic institutions for universal, fair, and affordable access to medicines. UAEM and our members find President-elect Donald Trump’s nomination of Representative Tom Price as Secretary for the Department of Health and Human Services unacceptable due to Price’s record on access to medicines and health services.
On the 51st anniversary of the passage of Medicare and Medicaid, his nomination represents an unprecedented attack on the safety net on which many Americans depend to provide healthcare services. His record of limiting access to reproductive healthcare and discrimination against LGBTQ individuals is completely contrary to the principle of providing equal access to healthcare to all Americans.
Additionally, our student physician members find the endorsements of Representative Price by the American Medical Association (AMA) and American Association of Medical Colleges (AAMC) particularly unconscionable, as we anticipate he would further restrict access to quality, affordable healthcare services and undermine support for equity in the provision of healthcare, especially for marginalized populations. We believe both the AMA and AAMC should consider Price’s appointment a threat to their work as physicians and educators, given their commitment to provide care “with compassion and respect for human dignity and rights.”
Case Western medical student and UAEM North America Board President Gloria Tavera said of the appointment of Tom Price, “Decisions made based on his personal beliefs will ultimately remove access to lifesaving medical care from tens of millions of people. These are patients that we have a mandate to care for, as students and researchers at major biomedical research universities.”
This year, UAEM has pushed for political action to ensure that drugs developed in university labs using taxpayer money are widely available and reasonably priced. Our “Take Back Our Medicines” campaign calls on the National Institutes of Health (NIH), the largest funder of biomedical research and development (R&D) not only in the US but worldwide, to adopt measures that would lower drug prices for Americans as well as for the global community. UAEM has long advocated for universities to be held accountable in their pursuit of truly innovative biomedical research and for the protection of access to medicines developed through that research, funded primarily with tax-payer dollars. The Take Back Our Medicines campaign recognizes that publicly funded research and resulting discoveries must be made accessible and affordable to all who need it.
Lowering drug prices and amending the current biomedical R&D landscape will require leaders who are willing to stand up to the pharmaceutical lobby. Tom Price’s record shows that he is committed to pharmaceutical business-as-usual; he has fought to destroy existing mechanisms for negotiating drug prices, like Medicare, as well as more radical drug pricing reforms. We need leadership that will act to transform the current system, which perpetuates high drug prices.The nomination of Tom Price guarantees further pharmaceutical profiteering, while millions are denied their right to affordable healthcare through high drug pricing.
“We cannot allow Price to undermine efforts to provide and improve access here in the U.S.,” says Sophia Tonnu, UC Berkeley law student and UAEM North America student leader. She continued, “Representative Price’s appointment threatens health care coverage for millions of Americans and directly counteracts efforts to push for negotiation of drug prices through public programs.”
UAEM and our student members call on the AMA and the AAMC to oppose the selection of Representative Tom Price. The AMA states in its Principles of medical ethics that “A physician shall support access to medical care for all people.” Our country must reject the threatening rollback of healthcare access in the U.S. and the AMA and AAMC, representing our current and future doctors, should be at the helm of this fight, working to reaffirm our shared principles of affordable and equal access rather than supporting those who choose to jeopardize these principles.
FOR IMMEDIATE RELEASE:
STUDENTS WELCOME UN HIGH LEVEL PANEL’s REPORT ON ACCESS TO MEDICINES
Washington, DC // Berlin, September 23, 2016: Universities Allied for Essential Medicines (UAEM) welcomes the final report released by the United Nations High Level Panel on Access to Medicines (UNHLP). Reflecting the multi-stakeholder setup of the UNHLP, the resulting recommendations present a pragmatic view. The report rightfully highlights that universities and publicly funded research must prioritize health objectives over financial returns, while highlighting that the current medical research and development (R&D) system is failing patients across the globe.
“We cannot continue to tweak the edges of a system which has proven to consistently harm people. An approach to R&D that focuses on real patient needs must become the rule, not an exception. ” said Manuel Martin, a medical student and student leader of UAEM. “The report represents mainstream positions of renowned experts and the scientific community worldwide and provides a commonsense framework for moving forward.”
UAEM students are outraged by the U.S. State Department’s dismissive reaction to the report. The U.S. government’s position echoes that of the lobbying arm of pharmaceutical corporations which today ranks as the sixth largest lobbyist group in the U.S., outspending defense contractors and the oil and gas industry. Pharmaceutical corporations, along with the U.S. Chamber of Commerce, have tried to undermine the work of the UNHLP since its inception, putting private interests ahead of the public good.
“Given the millions of people, rich and poor, who cannot access the medicines they need, a business as usual approach is simply not acceptable. Taxpayers today are paying for medicines at least twice: subsidising research at universities and public funded research institutions, and paying exorbitant prices for their medicines. Governments have a responsibility to stop these unethical practices and to ensure that the public gets a fair return on their investment.” said Rachel Kiddell-Monroe, Special Advisor to UAEM.
Today, the United States (US) Mission to Geneva intervened at an event at the UN General Assembly, which included Nobel Laureate Joseph Stiglitz and South African Health Minister Precious Matsoso, to promote the US Department of State’s public statement favoring the status quo. Panelists countered the US’s claims and emphasized the current lack of sufficient public return on public investment in health and the urgent need to take action to address this issue.
The UNHLP report provides well argued and proven policy proposals which need to be urgently implemented and UAEM welcomes the recognition of university responsibility to prioritize people over profits. Today, UAEM students, many of whom are future doctors, lawyers and researchers, are calling on all governments to begin seriously implementing the UNHLP recommendations. In particular, given upcoming US elections, UAEM is calling on the next US president to publicly commit to implementing the recommendations of this UNHLP report to ensure the affordability and availability of life-saving medicines for all.
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Student-driven organization urges public to channel outrage over EpiPen pricing into a sustainable solution
Washington, DC, August 26th, 2016: Universities Allied for Essential Medicines (UAEM) and a coalition of allies are calling on the government to “Take Back Our Medicines” by proposing a straightforward solution to prevent price gouging for medicines invented using taxpayer money in the United States. Students are demanding an end to pharmaceutical monopolies on taxpayer funded drugs in light of current outrage around the pharmaceutical corporation Mylan’s massive 550% price-hike for EpiPen, the lifesaving treatment for anaphylaxis. In response to this and the many other recent drug pricing scandals, future doctors, researchers, and lawyers across North America are now urging the public to join their call to action.
“While I commend the recent response to Mylan, we need to do more than pressure another company to lower the price of the next expensive medicine like EpiPen or else we’ll be right back where we were this week all too soon,” said Ali Greenberg, Advocacy & Campaigns Officer for UAEM in North America.
Through their campaign, UAEM is advocating to change the domestic landscape for publicly funded research and development in the U.S. so that it effectively promotes equitable access and reasonable pricing of lifesaving drugs, vaccines, and medical devices invented using taxpayer money.
‘We need a systemic solution” said Merith Basey, Executive Director of UAEM North America. “UAEM and our allies are calling for new terms in public grants, provided by the National Institutes of Health (NIH) and often given to universities, to guarantee that taxpayer-funded drugs are introduced into the market at an affordable price for the public.” Additionally, UAEM is urging the next president to take action to ensure that the NIH, which spends $31 billion on research and development (R&D) annually, begin using its existing legal authority to intervene in cases where excessive pricing is already taking place with federally funded medications.
Although public shaming has succeeded in pressuring Mylan to respond by offering an expanded but far from acceptable discount card system and more recently, a generic alternative, this is simply not even close to good enough. These band-aid solutions will never address the much bigger and all-too-familiar problem at hand and still leave the public healthcare system, paid for by American taxpayers, footing an enormous and unnecessary bill, driven primarily by pharmaceutical greed. Further, the EpiPen was developed entirely on the U.S. taxpayer dime meaning Americans are being asked to pay not once but twice for this lifesaving medicine while other high-income countries like Canada are offered the same product at a significantly lower price.
UAEM Board member Paul Maurizio, whose son is prescribed an EpiPen for his allergies, explained, “Like all parents, I am willing to bear the necessary costs for protecting my child’s life. However, I am not willing to accept a system that allows corporate greed to put our children’s and loved ones’ lives at risk.”
Given current outrage, we have an unprecedented opportunity to work together and leverage public pressure to ensure that our government responds by taking decisive action so that publicly funded medicines remain affordable to the public once and for all. Together, we can demand a better and fairer return on our public investment in biomedical research and development here in the U.S.
Show your support for preventing monopolies on taxpayer funded drugs by adding your name to these petitions:
Activists stage dramatic tug of war between Pharma Corporations & the people during DNC
Philadelphia, PA, July 23rd, 2016: On Saturday, July 23rd, Universities Allied for Essential Medicines (UAEM), the Other 98%, Act Up and other activist groups held a theatrical demonstration outside Hillary Clinton‘s Philadelphia campaign headquarters. The protesters staged a tug-of-war between the people and “pharma bro” and his posse, representing pharmaceutical corporations, in order to highlight that Clinton has not explicitly sided with the public when it comes to enacting price controls for medicines invented here in the United States. Protesters specifically urged Secretary Clinton not to back away from her pledges to make medicines more affordable in low and middle income countries and to get HIV/AIDS treatment to 30 million people by the year 2020.
During her electoral campaign in 2008, Secretary Clinton publicly pledged that she would make taxpayer-funded medicines “off-patent in developing countries” and has included in her platform putting an end to pharmaceutical corporations’ price gouging but she has yet to renew her pledge during the 2016 election. Additionally, she has shied away from the pledge she made earlier on the 2016 campaign trail concerning access to antiretrovirals, failing to even mention this topic in recent months. Clinton’s previous opponent, Senator Bernie Sanders, published a blog just last week in the Huffington Post entitled “Taxpayers Funded a Lifesaving Drug And Guess What Happened Next?” advocating for the U.S. government to take action to lower drug prices. No similar declaration has yet been made by the Clinton campaign.
UAEM and our allies took to the streets on Saturday and marched from the Love Statue in Philadelphia’s City Hall Park while chanting and carrying banners and signs which read, “No monopolies on taxpayer-invented drugs” and “We pay too much for meds we already paid to invent”. UAEM students, staff, ACT UP members and local activists squared off against “pharma bro” played by comedian John F. O’Donnell from RT’s “Redacted Tonight”, who was accompanied by several other well-known pharmaceutical CEOs, including Martin Shkreli, portrayed using larger-than-life masks and carrying giant money bags. After several rounds of verbal and physical sparring, activists dropped the rope and sent the pharma bros tumbling to the ground explaining to the crowd that it is not pharma we need to win over if we want to change how drugs are priced but rather the U.S. government. The protesters from the people’s side attempted to deliver their demands for the U.S. government directly to Hillary Clinton’s campaign, but they were barred from entering the building by about 30 members of Philadelphia police on bicycles.
Check out the video from Saturday featuring interviews with a number of UAEMers!
UAEM North America is currently running a national campaign to “Take Back Our Meds” advocating for the National Institutes of Health to adopt provisions in their grants that guarantee affordability of any medical product developed using federal, taxpayer funds.
For more information and for how to get involved: www.uaem.org/tbom
Open Letter: acknowledgement of Johns Hopkins University’s leadership and impact on drug and regimen development for tuberculosis
Washington, D.C., May 31st, 2016: Today Universities Allied for Essential Medicines (UAEM), Doctors without Borders (MSF USA) Access Campaign, Treatment Action Group (TAG), Public Citizen, and JHU current students and alumni have sent a letter to the President of Johns Hopkins University, Ron Daniels, in light of the Medicines Patent Pool’s (MPP) recent disclosure on its website that it has entered into negotiations on sutezolid with an unnamed “research based university”. Assuming that this is Johns Hopkins University, we wanted to acknowledge and congratulate Johns Hopkins University’s decision to enter negotiations with the MPP regarding the licensing of worldwide non-exclusive rights to sutezolid, a promising candidate for the treatment of tuberculosis (TB).
As the first academic institution to contribute to the MPP under its new mandate in TB, Johns Hopkins University is showing important leadership in global health. The inclusion of appropriate terms and conditions in the licensing agreement under negotiation will help to expedite the development of sutezolid, which has been stalled in phase II for several years, by enabling interested researchers and institutions to access and investigate sutezolid as a component of desperately needed novel regimens for TB; and if proven, ensure equitable access for TB patients and treatment providers.
We commend the university for responding to requests from the TB community presented as a petition signed by more than 750 concerned individuals and organizations from around the world, including members of the Johns Hopkins University community, to pursue a public health driven path for sutezolid’s development. This important decision will help to ensure the drug’s expeditious and appropriate clinical development in combination with other medicines, and its future accessibility and affordability for TB patients and treatment providers around the world.
We look forward to the timely and appropriate finalization of the licensing agreement between Johns Hopkins University and the MPP, and appeal to the involved parties to ensure opportunity for public and expert input, including from members of TB-affected communities and this coalition, to the terms and conditions of the agreement under negotiation. We thank Johns Hopkins and President Daniels for the prospect of renewed efforts to advance the development of newer and better treatment options for TB patients.
The complete letter is available here: Open Letter to President Daniels (May 31 2016)
GENEVA, WEDNESDAY 25th MAY 2016: Today activists from Universities Allied for Essential Medicines (UAEM), the Treatment Action Campaign (TAC), Knowledge Ecology International (KEI), STOPAIDS, Youth STOPAIDS, Young Professionals Chronic Disease Network (YP-CDN), Commons Network, People’s Health Movement and Salud por Derecho demonstrated outside the 69th World Health Assembly, demanding delegates begin negotiations on a binding agreement on Research and Development (R&D). For over a decade the World Health Organization (WHO) has danced around discussions on ways to fund medical research. While negotiations drag on in Geneva, millions of people across the world suffer from inappropriate and inadequate treatment – or no treatment at all.
“The way we manage medical innovation today prioritizes profits over people’s lives. It is failing people all over the world,” said Merith Basey, Executive Director of UAEM North America. “Currently WHO members are in a deadlock on an R&D agreement that could bring important new treatments to those in need. But patients cannot be kept waiting any longer, people die while they discuss.”
“The global system for funding medical R&D is now based upon the grant of monopolies and high prices for drugs, vaccines and other technologies. This system is predictably unfair and predictably expensive.The WHO is being asked to create a new approach which is more cost effective and consistent with the right to health and access to medicines for all,” said Thiru Balasubramaniam, of KEI.
In 2012, the WHO asked a Consultative Expert Working Group on R&D (CEWG) to analyse the state of the R&D system and to propose solutions. The group issued a report stating that the current R&D system was unable to meet global health needs, and that a legally-binding R&D agreement should be developed to address this need. However negotiations on such a framework stalled. Today the agreement still faces a fight to get back on the agenda.
An R&D agreement would establish a method of developing new health technologies without relying on monopolies enforced by patents to act as incentives and rewards. It would provide a framework to collaboratively prioritise the most pressing health needs, and then link those priorities to greater and more sustainable sources of funding. WHO members could collectively improve R&D outcomes by progressively delinking the cost of R&D from end product prices.
“Diseases like TB have been neglected for many years. In the last 60 years only three new TB medicines have come to market, yet TB kills more than 1.5 million people per year,” said Varoon Mathur, UAEM student leader from Canada. “People with drug-resistant TB struggle with taking nearly 15,000 toxic pills for two years, and six months of daily painful injections. They face side effects such as psychosis, vomiting, hallucinations, suicidal feelings, fever, and even deafness. Even after all that the cure rate is appallingly low.”
The activists protested the ongoing delay in negotiations on this agreement, seeking to catch the attention of World Health Assembly attendees ahead of sessions on the issue planned for Thursday 26th May. “Sekuyoze kube nini sizabalaza” rang out from the group as they marched towards the Palais de Nations entrance – an isiZulu song asking “until when will we be struggling?”
“I am appealing to WHO members to recognise our common humanity. You are here not to serve narrow political interests. You are here not to serve certain businesses. You are here to serve the common good,” said Anele Yawa, General Secretary of the Treatment Action Campaign. “You are here with a moral responsibility toward the families and friends of the 1.5 million people who died of TB last year. I appeal to you to make a binding R&D agreement a reality at this meeting. We cannot keep waiting.”
Background Briefing Document: UAEM Policy Brief on the CEWG
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Merith Basey // UAEM // email@example.com
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Thiru Balasubramaniam // Knowledge Ecology International // email@example.com
Washington, D.C., April 1st, 2016: On April Fool’s Day, Universities Allied for Essential Medicines came together with other global and domestic health activists to demand that the pharmaceutical industry stop charging unethical prices for medications during a protest at the Pharmaceutical Research and Manufacturers of America (PhRMA). Activists protested as a “PhRMA executive” operates a life-sized Uncle Sam puppet to defend PhRMA’s prices. The activists then cut the puppet strings between the U.S. government (USG) and PhRMA, symbolically freeing our country to adopt pharmaceutical development strategies that serve the public interest and to oppose trade deals designed to line the pharmaceutical industry’s pockets.
Activists called on the U.S. government to pledge to reform drug development policies, support a global R&D agreement for more affordable medicines in the developing world, and oppose trade deals like the Trans-Pacific Partnership (TPP), which would extend drug company monopolies at the expense of patients’ lives. “The U.S. Government can put a stop to the unethical practices that allow pharmaceutical companies to profit enormously on the backs of taxpayers and patients, pricing life-saving medications, already paid for via university research, out of reach,” said Merith Basey, Executive Director of Universities Allied for Essential Medicines.
PhRMA is a lobbying organization representing most major American pharmaceutical companies, as well as a significant number of foreign corporations, and has worked to obscure recent scandals in drug pricing, arguing simply that pricing is complex. The biomedical research and development system that PhRMA defends has failed the sick, bankrupted public programs, and left millions of poor people to die worldwide.
With the support of the U.S. government, the pharmaceutical industry is pushing for longer-term monopolies in trade agreements like the TPP and the Transatlantic Trade and Investment Partnership (TTIP). These monopolies would delay the production and availability of lifesaving, affordable generic medicines. Despite this, the U.S. government has led the charge for the TPP and the TTIP, apparently blind to the inherent conflict of interest of allowing the pharmaceutical industry to help craft these trade agreements.
UAEM and the many other activists involved in Friday’s protest are calling on the US. government and the pharmaceutical industry to adopt a patient-centered solution to this crisis. This solution must recognize that high drug prices disproportionately affect minorities, the poor, and the otherwise marginalized and vulnerable.
Novel and effective medications are here, or in the pipeline for cancer, heart disease, diabetes, clotting disorders, HIV and hepatitis C and yet they are not reaching those who need them most. “Patient lives are on the line now, we can’t wait,” said UAEM’s Ali Greenberg. “We demand affordable prices and a stop to practices that block access to care, especially those promoted by the deadly terms included in the TPP.” Ms. Greenberg continued, “We need the U.S. government to take the lead and to start proposing real solutions to the current global crisis in access to medicines.”
Friday’s action in front of PhRMA is part of a larger Global Day of Action against pharmaceutical industry greed, with actions organized on April Fool’s Day by UAEM and its allies in Sydney, Johannesburg, Rio de Janeiro, Tokyo, Delhi, Ahmedabad, New York City, Boston, and San Francisco. All of the actions highlighted scandals in drug development and price gouging that robs U.S. taxpayers, while leaving patients in developing countries without the medicine they need to survive. The USG must reject the provisions in the TPP that will negatively impact access to medicines, and support discussions around the creation and adoption of a global research and development agreement at the World Health Organization, which would set standards for affordable pricing of medicines worldwide. As Jacob Levi from ACT UP put it, “It’s time to stop letting the U.S. government play PhRMA’s fool.”
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Washington, D.C. February 24th 2016 — Today, Universities Allied for Essential Medicines (UAEM) is launching Re:Route, a mapping of alternative biomedical research and development (R&D) initiatives. Launched in time for the United Nations High Level Panel on Access to Medicines dialogue in March 2016,www.AltReRoute.com provides a qualitative review of alternative biomedical R&D initiatives around the world. This student-driven project provides evidence of the need to start a truly game changing dialogue that focuses efforts on people oriented and needs-driven biomedical R&D.
The crisis of high drug prices, antimicrobial resistance and tragic events like the Ebola emergency and now Zika, all point to the need for a fundamental change in the way medicines are researched and developed. Under the current profit-driven system, approximately 1 in 3 people around the world lack access to essential medicines. Neglected diseases, which primarily affect the world’s poor, only receive 2% of the funds invested in R&D annually, at the same time new blockbuster drugs such as Gilead’s Sovaldi are being priced at $84,000 for a 12 week treatment in the Unites States.
Re:Route investigates existing and proposed alternative R&D initiatives which purport to address the failings of the current system. The mapping is not intended to be fully comprehensive but covers 81 initiatives that fulfilled at least one of the accepted alternative mechanisms. These were delinking prices from costs of R&D, ensuring open source and data sharing, and collaborative approaches as well as push, pull, and/or pool mechanisms. “81 initiatives may seem impressive. But people are still dying because they cannot afford medicines or there is no market for the medicines they need,” said Rachel Kiddell-Monroe, Special Advisor to UAEM and member of Medecins Sans Frontières’ International Board. “Evidently, these 81 initiatives do not represent the answer to the access crisis.”
Overall, the mapping reveals a lack of fundamental systemic change in biomedical R&D. While some initiatives have undoubtedly made important advances on specific diseases and systemic issues, others are simply promoting a “business as usual” approach. However, “Some of the more successful initiatives we mapped may provide the building blocks for a new approach to biomedical R&D,” said Alexandra Greenberg, a student leader at UAEM and a co-author of Re:Route. “As a student, I firmly believe that universities have a fundamental role to play in ensuring that these building blocks become part of the new normal in R&D.”
The Ebola outbreak epitomizes the pitfalls of the current piece-by-piece approach to needs-driven R&D. A potential Ebola treatment was not developed for use because there was no financial motivation for pharmaceutical companies. “Now more than ever, we have an historic opportunity and major responsibility to help drive transformative biomedical R&D that serves people over profits,” said Merith Basey, Executive Director of UAEM North America. “We aspire for this mapping to be a key tool for students and researchers to help them better understand the current R&D landscape and be better equipped to lead the change necessary to tackle the system at its core.”
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Universities Should do More to Advance Biomedical Research for Neglected Diseases (April 21, 2015) – Report Card shows major universities should do more to advance biomedical research for neglected diseases.
UAEM Statement on TPP (October 6, 2015) – The TPP sets a disturbing precedent for global commerce that will have long-term effects on the price of lifesaving medications around the world.
Gilead’s Hepatitis C treatment license misses the mark, despite some increased competition (October 24, 2014) – Gilead’s licensing agreements ignore the key middle-income countries that typically experience high burdens of hepatitis C.
UAEM Releases Statement on 67th World Health Assembly to US Delegates (May, 2014) – Together with IFMSA and HAI, UAEM analyses the outcomes of the WHA.
Case Western Reserve University signs SPS (April, 2014) – CWR University has now its own policy for socially responsible licensing
First of Its Kind Report Card Shows Major Universities Falling Short on Life-Saving Research for the Developing World (April, 2013) – The new report card assesses these universities on their commitment to researching drugs and technologies to treat “neglected diseases” in the developing world, and to making their medical innovations available and affordable for those who need them most.
UAEM statement on World Health Summit (October, 2012) – A call to M8 leadership on global health
UAEM statement after meeting on follow-up of the report of the CEWG (November 2012)
Med Students to UC Leaders: Make Our Medicines Affordable Worldwide (September 29, 2011)
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