access to health
Petition to U.S. House of Representatives, U.S. Senate, President of the United States
Don't slash healthcare funding for HIV+ women, children, and families!
For decades, a federal funding program established through the Ryan White CARE Act has been a lifeline to millions of individuals living with HIV in America through its provision of medical care, prescription drug assistance, and supplementary programs to support improved health and overall quality of life. While all components of the Ryan White program are of immense value, one particular part of the program (referred to as Part D) has been of particular importance as it serves some of the most vulnerable populations living with and/or affected by HIV--women, infants, children, youth, teens, and their families/caregivers. Ryan White Part D receives significantly less funding than the other Ryan White programs. And yet, President Obama's proposed 2015 fiscal year budget proposes eliminating the Part D program and consolidating it with another part (Part C) of the funding. Part of the rationale for eliminating Part D is that 67% of Part D funded agencies also receive Part C, so presumably by consolidating the programs administrative costs will be reduced and presumably there will be more funds available. However, have been no guarantees made that ALL of the communities currently served by Ryan White Part D will survive this consolidation, only that they can "apply" to be a Part C grantee, with no promise that they will be selected. This uncertainty puts innumerable families across the country at risk. Lip service has been paid to the importance of securing the health and stability of the vulnerable populations served by the Part D program, but that has been eclipsed by actions which indicate otherwise. There is a community effort that is gaining momentum in an attempt to get the Health Resources and Services Administration (HRSA) and the US Department of Health and Human Services (HHS) to reconsider this matter, involving a plethora of individuals, families, community advisory boards, policy advocates, and several prominent and grassroots organizations that work on behalf of HIV+ and affected women, children, youth, and families, including the AIDS Alliance for Women, Infants, Children, Youth, and Families; the Positive Women’s Network; the National Black Women’s HIV/AIDS Network; Advocacy Without Borders; Positively U; the 30 for 30 Campaign; many Part D grantees, and others. But we need your help. We need to let HRSA and HHS -- and members of Congress as they debate the budget -- know that this program saves lives and needs continued support. Even if you do not have HIV and/or don’t know a soul who does, your signature will mean the world to women, children, and families dealing with HIV every day. Would you sign and share today? With gratitude, Morénike, Advocacy Without Borders
Petition to Chimerix Inc
To please give a trial antibiotic called "hexadecyloxy propyl" to a 21 month toddler, with A.L.L leukemia. Who is fighting for his life. At John Hopkins hospital in Baltimore, Maryland.
This is important to me because Judson Shepherd is my son, and I don't want him to die. The virus he has is called Adenovirus. The medicine he is on is not working. His immune system is compromised by the chemo drugs that he just received. The virus is taking over, and there is no other medicines the hospital has that will help. And he desperately need a bone marrow transplant, and can't have one till the infection is gone. So we are asking Chimeric Inc., if they will allow us to get Judson on this trail antibiotic medicine that they have available.
Petition to Chimerix
Release Brincidofovir for compassionate use to treat the adenovirus plaguing 7-year old Josh Hardy right now.
When Josh, my cousin's son, was 9 months old, he was diagnosed with a malignant rhabdoid tumor of the kidneys. It’s a highly aggressive, rare form of cancer that only 15 children are diagnosed with each year. In November 2013, he had a bone marrow biopsy and learned he had a bone marrow disorder, as a result of a treatment he had earlier in his life. On New Year’s Eve, Josh checked into St. Jude for inpatient care. He started 10 days of chemotherapy, and on Jan. 10, got the bone marrow transplant. Though he had heart and kidney issues before, the transplant caused a lot of complications for Josh. On Jan. 14, Josh had to go to the ICU for heart failure issues and just five days later was put on a ventilator. As soon as thing started to improve Josh the adenovirus showed up because of Josh’s compromised immune system. The medicine Josh was given through an IV to treat the infection ended up damaging his kidneys. His doctors recommended Brincidofovir, an antiviral drug manufactured by Chimerix that is still in trial form. They say that other children treated with the drug had their adenovirus clear up within two weeks. For complicated reasons, and because the drug is close to going to market, it isn’t available to Josh right now. According to the American Cancer Society’s website, medical professionals use the term “compassionate use” to refer to the treatment of a seriously ill patient using a new, unapproved drug when no other treatments are available. Drugs that are being tested but have not yet been approved by the U.S. Food and Drug Administration are called investigational drugs. These drugs are generally available only to people who are taking part in a clinical trial (a research study that is testing the drug). Single-patient access can be granted if the patient’s doctor requests the drug from the company that makes it. Josh’s doctor did. If the company agrees, the patient’s doctor works with the drug company to ask the FDA to approve the drug for use by this one patient. Kenneth Moch, the company’s president and CEO, said Friday that Chimerix officials are “acutely aware of the situation faced by this patient.” However, he said they cannot help Josh. Moch said that because the drug is in phase-three clinical development, they cannot allow it to be used by patients through the compassionate use program. He said that five years ago, much earlier in the drug’s development, Chimerix began receiving requests for emergency use for many viral infections. While they could fulfill a small number of requests, two years ago they had to stop fulfilling those. “As we progressed to larger and more complex safety trials, we made the decision two years ago to stop the program and focus resources on earning FDA approval,” Moch said. He said the drug could be widely available in 2016—if they are lucky. “We understand this great need,” he said. “That’s what drives us to focus on getting it available. It creates these really difficult complex situations where the need to pursue the formal clinical development under the FDA process takes precedent over other needs,” he said. Josh's family continues to keep their faith in God and pray for Chimerix to find a way to help or for the virus to go away on it's own! Please join us in asking Chimerix to provide compassionate use access to this drug for Josh!
Petition to United States Department of Agriculture
Urgent call for the USDA to allow Lipistart, a medicinal formula, to be imported into the U.S. for children with genetic metabolic disorders.
Our two year old son, along with many other children has a genetic metabolic disorder that requires a specific type of nutrition to stay healthy and alive. Until just a few years ago, when genetic newborn screening was not available such children would often die in their sleep shortly after birth because no one knew they were sick and needed specialized and regimented nutrition. Recently, as parents of these children, we found out that Lipistart, the formula our son uses is being barred from being imported into the U.S. by the USDA. Until July 2013, the company Vitaflo USA was able to import this product from the UK without a permit required for importing products containing milk. Now the USDA is requiring Vitaflo to have this permit but they are not granting the permit to the company. The supplies of Lipistart have dried up and only now we have found out that our children will not be able to receive their medicine/food. Just yesterday I found out that one child could not take the substitute formula and as a result had to have surgery to put a feeding tube into his stomach to pump his nutrition into him. When such children cannot have their formula, they have glucose crash, they end up in the hospital with an IV, often they have organ damage in the form of liver damage, kidney failure, cardiomyopathy, blindness, and brain damage. Many children have to take Lipistart because their little bodies cannot tolerate any other formula or breastmilk. We cannot sit silently while the bureaucracy destroys our children's lives. We need your help to get our voices heard loud and clear so that the USDA can see this problem from a very real and different perspective. Please sign this petition to ask USDA to immediately import this formula for all the children who need it NOW!