The United States lead the world in the development of vaccines for Novel Coronavirus, likely to make it into the arms of every American by May of 2021. During these unprecedented times, where does this leave our brothers and sisters in neighboring underdeveloped countries and developing nations? The Washington Post investigates The World Trade Organization’s impasse on proposing to waive “countries’ obligation to enforce patents on covid-19 technologies, including vaccines, during the pandemic.”
(TWP, 2021).
Georgetown University’s Head of National and Global Health Law, Madhavi Sunder and Matthew Kavanagh, director of global health policy and politics give expertise on the effects of lower income countries delaying distribution of vaccines until possibly 2024. From their viewpoint, accessibility to generic manufacturing could improve protection if the legalities behind patent protection for international countries were to put aside politics for the sake of public health.
Sunder explains, …”what they [WTO] must not do is block producers in Africa, Asia and Latin America from making lifesaving vaccines and exporting them to their neighbors.”
The development of vaccinations for low income countries and communities has a history of firewall type mechanisms to block certain access to shared data and information. The first reason is funding. Kavanagh’s perspective evangelizes the need to understand the ethical standards behind shared practices for shared technology with low and middle income countries. The Doha Declaration, fundamentally developed during The Aids Epidemic in Africa, causes shift in present hope for progressive action and not repeated history:
“Two decades ago, in the midst of the AIDS crisis, the WTO’s Doha Declaration affirmed intellectual property rules“should not prevent members from taking measures to protect public health.” (Kavanagh, 2021.)
Is a new variant posing as this “Invisible Threat” the necessary reason to implement patent waivers? What does this look like for the future of generic manufacturing? Our experts explain that with waived patents, increased manufacturer capacity through shared data technology will increase production, export, and distribution to populations. The second reason behind this international blockade argues the complexity in the making of the vaccine between generic versus actual manufacturing. Kavanagh and Sunder explain that the covid-19 pandemic necessitates both a temporary intellectual property waiver from the WTO and a bold effort to share know-how — not in 2024, but now.
Between the World Health Organization’s implicit bias in the leverage behind opening up vaccines to EVERYONE and the World Trade Organization’s complexities in sharing the machinery, the dependency on making money off people requires a deeper level of understanding about each manufacturer collecting ‘royalties’ from each distribution of a vaccine. We are living in a time where the lack in revealing concealed information to those who need it most may conclude that those that are left out must wait and in the meantime fend for themselves. What are your thoughts and how do you foresee the social and economic impact on our global Sickle Cell brothers and sisters. Leave a comment below!
Sunder, M., Kavanagh, M. March 2021. Don’t let intellectual property rights get in the way of global vaccination. The Washington Post.
The New York Time’s Gina Kolata exposes the Genetic Technology manufacturer, Bluebird Bio Inc., for the development of cancer in Sickle Cell Disease patients undergoing clinical gene therapy. The National Heart, Lung, and Blood Institution seconds the pause to a decade long phenomena to investigate a complete analysis of whether Bluebird “gene inserted into patients’ DNA landed near a gene linked to new cancers” (Tisdale, 2021.) Experts complicate the question, Kolata writes, in facts that people with sickle cell disease are known to have increased risk of leukemia, even without treatment. (Kolata, 2021.) The disability of Lentivirus, one of the main components used in modifying gene therapy, and Busulfan, a powerful drug
“linked to cancer that clears the bone marrow to make space for modified gene therapy”-John Tisdale, NHLBI Cellular and Molecular
is the second variable to disable the ongoing gene therapy trials at both Bluebird and Boston Children’s Hospital. Where does this information leave the Sickle Cell Community?
“It feels like the Sickle Cell Community just can never get a break”- Dr. Frei-Jones, researcher, University of Texas School of Medicine SA
Temperature check warriors. Where is the trust between undergoing a genetic trial and enhancing the quality of life in our blood disease? All we seeking ALL options to our best knowledge? Do you believe funding for clinical trials leave the patient in further decline of health and financial burdens after repeated chemotherapies? Who is held accountable for this disconnect in linkage between seeking a “cure” or “care”, profiting a gene therapy over people’s health? What are the costs and risks to weigh before and after halting the experiment? This notion that SCD patients are known to have an increased risk of leukemia: Are we understanding as a whole the medication taken to affect one component of the body that could completely offset and deteriorate a completely different part of the body? The fundamental research behind treating Sickle cell disease has an array of complexity in chemical treatments, capsule medicines, amino acids and supplications. All are probably necessarily needed to combat the horrors of an induced pain crisis. Be informed. Talk with your Doctor. Seek a second opinion.
We as Sickle Cell Warriors battle so many unknown discriminations just through our basic treatments, facility care, and hospitalizations. What are your thoughts and general feedback on petitioning when faced with discrimination in medical care? What tools do you use (i.e. writing letters, couseling/mediation) to reinforce your human rights as a patient? How confident are you in making informed decisions when getting vaccinated? How do you feel about the pressures to take a vaccine or risk losing employment, housing, fundamental essential needs, etc? It is important for the Sickle Cell Community to completely understand the suppressing tactics involved in making informed decisions with our life and health.
The uncertainties behind distribution of the Coronavirus vaccine presents its share of challenges across the board. Examples include limited accessibility of the vaccine in minority communities, the legality in doctors and scientists upholding medical truths behind the safety of manufactured drug, the uninformed truths behind accountability of a released, federally unapproved, drug that is not legally patented. AFDLS identifies the common misconceptions of intimidation and pressure into taking experimental vaccines, proving the theory that people should never be pressured to comply with cohesion in taking any experimental vaccine or drug. According to AFDLS disclaimer, protecting medical privacy provides the “opportunity to stand up to policy directives by large private and public corporations”…this type of assault on medical privacy is invasive, aggressive, and unethical.
Let us know the honest truth. We as a community are stronger and better off as a united front growing in truth…together.
For more information and resources to sign the petition visit below.
The 2020 year has brought on so many challenges battling Coronavirus with many unknown expectations to vulnerable populations like Sickle Cell Disease. From reoccurring hospitalizations, quarantines to premature death. This year has opened the door to political and public movements beyond the human health expectation. Rise in Coronavirus cases, rise in unemployment, rise in natural disasters leaving a superseding rise in the prior two. With the hope for our Saviour to save the day, many are left feeling troubled, hopeless, anxious, and worried about the future. Phillippians 4: 6-7 states “Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God”. The Sickle Cell Community has indeed faced turmoil being put at the forefront of decision making about the vaccination for Coronavirus, yet the medical “experts” have challenges making clear decisions on how to medically and clinically manage Sickle Cell Disease. What are your thoughts on taking the vaccine even though it doesn’t guarentee clear instructions on curing the virus? How do you feel about the reoccurring visits to receive repeated doses of the vaccine? Your thoughts matter. Your rights matter.
Studies predict that with new treatments overtime the “future human” will be cured from Sickle Cell Disease. According to Children’s Health Defense, neither the HHS nor WHO had ever performed vaccinated studies prior to 2017. The researchers suggested that the DTP vaccine is killing more children than the diseases it targets. (Robert F. Kennedy, CHD 2020).
How can YOU, the patient or the caregiver of a patient, tell when true information versus misinformation is acknowledged? Everything has fine print. So how does the Sickle Cell Community look at the fine print of the information given to us in general? How are doctors and medical industries showing transparency in informed care; explaining to the average person the truths of the side affects after taking a vaccine. What are the right questions to ask when making an informed decision, not just about a vaccine, but medical treatment as a WHOLE ? The difference in choice versus force means more to what meets the eye. We’re praying for our Community. Both Domestic and Internationally. Stay informed.
Kennedy, R. F., 2020 April 3. The Bill Gates Effect: WHO’s DTP vaccine killed more children in Africa than the diseases it targeted. Children’s Health Defense.
Are the pharmaceutical companies, medical industries, and institutions that tell Sickle Cell patients they’d “cure” their disease, ultimately making the patient sicker than healing the pain? Are experts even considering the possibility of developing a secondary diagnoses? I’ve been observant for a while to see where the medical industry would go with this notion to undergo at least three to five years of chemotherapy, radiation, and immunotherapy treatments. The underlining cause of sickle cell pain is due to inflammation in the body. The effectiveness of a strong dietary habit, however, outweighs the need to go through the dangerous process of chemotherapy. Are companies like CRISPR fully explaining the dangers involved in this treatment process in Layman’s Terms? Is the Sickle Cell patient well informed on their options? What baffles me is, every two to three years there is some new FDA approved product on the market for Sickle Cell. Cancer Drugs are being repurposed specifically for Sickle Cell Disease, but, do they fit the underlining issues of minimizing hospitalization due to vaso occlusive crisis? Pharmaceutical companies have to sell this product, so they get YOUR doctor, to basically consult you into making a decision that is life changing, life altering, and new to what meets the eye. What are your thoughts on how to identify the patterns that makes this choice easy versus difficult. Comment below we’d love to hear feedback!
How do you feel about Gene Therapy and Bone Marrow Transplants? What are your reasons why you would or wouldn’t go through the process? What should the experts and leaders do to gain the trust of Sickle Cell patients and community? How could this possible treatment affect or impact the livelihood of living with Sickle Cell Disease? Let us know how you feel..
The new era of genetic technology introduces therapies such as mRNA vaccination which has been in developmental stages since the 70’s and 80s. For generations scientists and medical experts recommend preventative therapies such as flu (flu shot), pneumonia, and even chicken pox. Since 2020, the Coronavirus escalates the moral complexities within vaccination development with risks and concerns for safety and efficacy, as well as accessibility for all, especially those who are vulnerable populations. A CNN news article explains how the Centers for Disease Control warns Covid-19 vaccines might not protect people who are immunocompromised and that populations are urged to take precautions as if not vaccinated. (CITE) According to the article, there are “potential reduced responses to Covid-19 vaccines”. The CDC did not advise (July 2021) to receive an additional shot but notes that it continues to evaluate benefits versus risks of getting an additional shot. Is there a need for the Sickle Cell community to receive booster shots? A Johns Hopkins study (June 2021) found that researchers suggesting extra shot may help increase antibody levels (CITE). The CDC suggests that body response to vaccines might be reduced for several groups. But what are the complications and how do we further our navigation process where complications from Covid arise? According to The Hill, “the real superstar” is that which is the process that is used to revolutionize future vaccines such as mRNA development at “pandemic speed”. (CITE) Dr. Carlos Del Rio, VP of Infectious Disease Society of America and Professor of Medicine at Emory University explains from his point of view how he hopes the process of approval can help save lives. Do we as a community understand the approval process? Defined as Emergency Use Authorization or EUA, “the timeframe to present evidence to the FDA on the ranking systems of safety and efficacy follow ups requests for permission to introduce biologic product into interstate commerce.” (CITE) A Biologic License Application is the process to submit this request to FDA. With lack of accessibility to global populations we weigh the risks of expedited approvals for vaccine distribution while scaling up manufacturing capacity. Some of the challenges right now that we must view a succinct lens of focus on include global availability with effectiveness of combatting the new variant. Three key viewpoints are that 1. People that are vaccinated are still contracting Covid, 2. Children are contracting at faster rates with increased hospitalization numbers, 3. The need for transparency in the CDC’s safety protocol confusion; Federal v. State mask mandate and the likelihood of increased gathering’s (retail trends, concerts) while schools are about to open. What are your thoughts, viewpoints as we enter this autumn season with a stronger more dangerous variant trace? How can we as a community leverage the resources around us to create trust in the process of making sure we’re staying safe getting our vaccines, yet protecting our bodies from any additional harm. Your constructive feedback is greatly appreciated:]
