Is marijuana a medical miracle? The truth is, we still don’t know

Whats the evidence behind medical cannabis? While many attest to its healing powers, research into the full potential has long been legally restricted

Is marijuana a medical miracle? The truth is, we still don’t know

Is marijuana a medical miracle? The truth is, we still don’t know

Whats the evidence behind medical cannabis? While many attest to its healing powers, research into the full potential has long been legally restricted

Read more: https://www.theguardian.com/society/2018/jan/15/medical-marijuana-does-it-work-miracle-drug-evidence

Julia Louis-Dreyfus shares breast cancer diagnosis

The star of Seinfeld and Veep tweeted a note to praise her glorious support network and fantastic insurance but added that not many women were so lucky

Julia Louis-Dreyfus has revealed that she has been diagnosed with breast cancer.

The Emmy-winning star of Seinfeld and Veep shared a note on Twitter on Thursday to inform her followers while also reminding them of the importance of universal healthcare.

The good news is that I have the most glorious group of supportive and caring family and friends, and fantastic insurance through my union, she wrote. The bad news is that not all women are so lucky, so lets fight all cancers and make universal health care a reality.

The 56-year-old has received support on Twitter from fellow actors Sarah Silverman, Debra Messing, Veep star Tony Hale, Christina Applegate and Michael McKean. According to a statement from HBO, she received the news the day after she won her record-breaking sixth Emmy for playing the lead in HBOs hit comedy Veep. The show is set to finish at the end of next season. That decision was not influenced by the diagnosis.

Our love and support go out to Julia and her family at this time, a statement from HBO reads. We have every confidence she will get through this with her usual tenacity and undaunted spirit, and look forward to her return to health and to HBO for the final season ofVeep.

Louis-Dreyfuss plea for universal healthcare comes after other political statements criticizing the decisions being made by the Republican party. My father fled religious persecution in Nazi-occupied France, Dreyfus said at the SAG awards earlier this tear. Im an American patriot, and I love this country. Because I love this country, I am horrified by its blemishes, and this immigrant ban is a blemish and its un-American.

Read more: https://www.theguardian.com/culture/2017/sep/28/julia-louis-dreyfus-breast-cancer-diagnosis

Doctors can’t ignore politics. Our patients’ lives are at stake | Farzon Nahvi

Our patients depend on us for their care we must help them get it, whether that comes in the form of pill or policy

If all politics is local, then Washingtons healthcare debacle has brought politics to the front stoop of every healthcare provider in America. There is no escaping it debates taking place on Capitol Hill are set to affect the very survival of our patients. Irrespective of political leanings, doctors, nurses and providers of all stripes have ethical and professional obligations to speak up and become engaged in order to protect their patients.

While politics have always affected medicine obstetricians and gynecologists have long fought for womens health issues, for example current political events have pushed this into overdrive. In our current political climate, it no longer even makes sense to distinguish between events in Washington and my patient in front of me.

Earlier this year, Congress put forth a bill that among other things would strip 23 million patients of their health insurance, allow insurance companies to exclude people with preexisting conditions, eliminate essential health benefits such as pediatric services, ambulance rides, and lab tests from their plans, and increase costs, especially to older Americans.

Politicians are speaking frankly even eagerly about stripping services away from patients who currently have them. Each patient I see becomes another example of someone whose life could be at risk should any of the measures debated in Congress pass into law.

My elderly patients infected bedsore, for example, could only worsen, leading to sepsis and even death if she could no longer fill her antibiotic prescription. My patient with breast cancer, if unable to obtain chemotherapy due to her preexisting condition, would inevitably die. And any pediatric patient I see could suddenly be at risk of entirely preventable illnesses if left unimmunized due to the elimination of their essential health benefits.

Suddenly, being a physician and ignoring politics has become a lot like being an airplane pilot and ignoring the fact we are flying with the cabin doors wide open. Patients are about to be whisked into the sky with no parachute it is just as unethical to ignore politics as it would be to continue flying that plane pretending everything was OK.

The truth is that avoiding politics is not only unethical, but also unprofessional. While many doctors, scientists at heart, find political advocacy uncomfortable, it is in fact a required part of the job.

In order to be allowed to practice independently, physicians must graduate from a residency training program and demonstrate proficiency in six core competencies. Most of them, such as medical knowledge and patient care and procedure skills, are well known. It is the sixth systems-based practice that is often overlooked, but equal in importance.

To quote the governing body that mandates these requirements: doctors must demonstrate an awareness of and responsiveness to the larger context and system of healthcare and are expected to advocate for quality patient care and optimal patient care systems.

In other words, to practice independently, we must not only know how to prescribe our medicines and perform our procedures, but also work toward improving our entire healthcare system. Our professional governing body makes no distinction between helping patients through syringes, scalpels or statutes.

As German physician Rudolph Virchow noted in 1848: Medicine is a social science, and politics is nothing else but medicine on a large scale.

Importantly, as physicians, we advocate for our patients all the time. We feel completely at ease when we do this on the day-to-day level. If one of our patients cannot get an appropriate follow-up appointment with a specialist or their insurance company denies them a specific medication, for example, we eagerly take up arms. We fight a million reams of red tape on a daily basis to get that one patient what she needs.

We must now embrace this same ethos on a macro level by lobbying our representatives, joining activist groups and even running for office ourselves. The only difference is the outsize impact these efforts could have: working through a single ream of red tape in the form of legislation could positively affect the lives of millions of patients.

Laws affecting human lives should not be drawn along partisan lines, but by evidence-based policy thats best for constituents. As Washington fails this litmus test, citizens must step up. As healthcare providers, advocating for our patients is both an ethical imperative and a professional requirement. Our patients depend on us for their care we must help them get it, whether that comes in the form of pill or policy.

Read more: https://www.theguardian.com/commentisfree/2017/aug/22/doctors-politics-patients-lives-are-at-stake

Republican lawmaker key to health bill’s passage lambasted at town hall

Constituents heckle and boo Tom MacArthur, calling him a killer as 500 people gather for New Jersey event: I dont think Ill vote for him again

Tom MacArthur, the New Jersey congressman who has been celebrated in conservative circles for helping pass the Republican healthcare bill, came back down to earth with a bang on Wednesday night when he was booed, heckled and generally chastised during a nearly five-hour town hall meeting.

In Willingboro, hundreds showed up to lambast MacArthur, most fuelled by their congressmans intervention to revive the ailing American Health Care Act (AHCA).

MacArthur was branded a weasel, a killer and an idiot by constituents angry at his amendment to the bill, which would allow states to opt out of rules that protect individuals with pre-existing conditions from being charged more for healthcare coverage. This stipulation proved enough to satisfy the hard-right Freedom Caucus and the bill which would probably see millions of Americans lose their healthcare coverage passed the House on 4 May.

The majority of Republicans who voted for the bill are not holding public events this week, despite being on recess. Those who have dared face voters have been pilloried. Aware of this, MacArthur kicked off his town hall at 6.30pm with a promise to respond to every single question, for as long as it goes. He was still being quizzed by angry residents at 11.20pm.

More than 500 people had gathered outside the Kennedy Center in Willingboro, just across the Delaware river from Philadelphia. It was a lively and loud scene, a number of voters chanting, waving signs and generally causing a ruckus.

Our health matters more than Toms net worth, one banner read. A sign showed a picture of MacArthur with I took your healthcare written on his forehead. Another described MacArthur, a former insurance executive who was elected in 2014, as MacWeasel.

Claudia Storicks, a former nurse who has been on disability for the past two years, had travelled from Pemberton, New Jersey. She has diabetes and charcot foot a weakening of the bones caused by nerve damage and was using an electric scooter. She is insured under the Affordable Care Act (ACA), the Obama administration legislation the AHCA seeks to replace.

It was the only insurance that I could afford, she said. Ive been able to afford my medication and my doctors visits because Im on the ACA. Otherwise I probably would have lost my house and my foot.

Storicks voted for MacArthur in 2016 hes a businessman and I thought he had a good sense about taxes, she said but now described herself as very angry at the prospect of the ACA being repealed.

That would mean that my diabetes would get out of control, my foot would probably get worse, and Id probably end up in hospital and losing my house.

Medford, New Jersey, resident Jay Wilder, 72, was first in line. He arrived six hours early. Im really worried about pre-existing conditions because I dealt with it when I was going from my job before I had Medicare, he said.

Wilder had had a heart attack and said he couldnt afford healthcare. I just lived without healthcare, hoping that nothing would happen. It was very difficult because when youre 64 years old you start having health issues.

The anger outside the venue set the tone for the event itself. MacArthur walked out to Coldplays A Sky Full of Stars, and to a similarly tepid round of applause from the 250 people who had made it inside. The congressman smiled and offered his hand to a man wearing a green shirt, sitting in the front row. The man kept his arms folded and thrust his head away.

The four hours and 50 minutes that followed were no less hostile. MacArthur had asked constituents not to boo him but that proved to be in vain. People repeatedly told him he had blood on his hands.

A man who had received a kidney transplant feared what would happen to people like him under the AHCA. A resident whose wife had recovered from breast cancer was concerned that she would always have a pre-existing condition and did not want that to determine which state she lived in.

A woman had brought her two young children, one of whom had learning difficulties, and objected to them potentially being placed in a high-risk pool an aspect of MacArthurs amendment designed to assist people with pre-existing conditions, but which could lead to higher health insurance costs.

MacArthurs responses that only 7% of Americans were in the individual market, that people would not lose their insurance (the Congressional Budget Office, in its assessment of an earlier version of the bill, said 24 million would probably do so), and that there are loads of other people who dont agree with you did not placate the crowd.

Nor did his response to repeated chants calling for single-payer healthcare.

Government bureaucrats can be very dangerous when they have power to make decisions on peoples health, MacArthur said, prompting one woman to tell the congressman she would prefer that scenario than someone in an office of an insurance company making the same decisions.

Something was awoke in me

Read more: https://www.theguardian.com/us-news/2017/may/11/republican-healthcare-bill-tom-macarthur-protest

How defunding Planned Parenthood could wipe out transgender healthcare

For many transgender people, finding local clinics that provide medical services without bias can be near impossible, leaving thousands without basic care

Calvin Kasulke was living with his parents when he came out to them as a transgender man. All of a sudden, he recalled gingerly, I was disinvited from living at home.

He needed a new place to stay. And Ithaca, New York, where he had gone to college, was the obvious choice. He would have friends there, he figured, and a place to live.

And also, he said, Planned Parenthood was there.

Unbeknown to many, Planned Parenthood is one of the largest sources in the US of transgender healthcare. The embattled provider offers hormone replacement therapy, which helps a persons body appear more masculine or feminine, at dozens of its locations, and a growing share of its staff are trained to perform routine sexual health exams for trans patients.

They are one of the most important providers of trans healthcare in the country, said Harper Jean Tobin, the director of policy for the National Center for Transgender Equality, adding that their clinics are some of the few transgender healthcare providers located outside major cities. Many of their clinics are the only places for miles around that trans people can go to for hormone therapy, HIV tests, and pap smears, and not face discrimination.

With Congress on the brink of attempting to defund Planned Parenthood because of its role as an abortion provider, those services could easily be caught in the crossfire. Each year, Planned Parenthood is reimbursed hundreds of millions of dollars for family planning services it provides at little or no cost to low-income Americans. If Congress were to freeze Planned Parenthood out of those funding streams, it could force an unknown number of health centers to close. Health providers have long warned that this would have a detrimental impact on womens health. But, Tobin said, the cuts could be particularly disastrous for trans people.

As it is getting more real, in the back of my head I said, Oh shit. What am I going to do now? said Raven Green, a patient of Planned Parenthood of the Southern Finger Lakes. I dont know where else I would go.

The state of transgender healthcare in the US is already a fragile one. In one survey after another, large numbers of transgender people report difficulty accessing both basic and specialized services because of biased providers or the distance to the nearest provider with adequate knowledge of trans health issues. Only about two-thirds of trans people who want hormone replacement therapy, a common treatment during gender transition, have actually received it, according to a major survey of transgender adults taken in 2015, and 23% have avoided getting essential care out of fear of harassment. Thirty-three percent have had a negative experience with a healthcare provider, like needing to teach their doctor the fundamentals of transgender care. And 29% reported having to travel at least 25 miles for transition-related care.

The result is that thousands go without care every year.

Everything is stacked against trans people in the healthcare system, said Kasulke, who now volunteers with Planned Parenthood part-time. Theres always an extra layer of, am I going to have to educate my own provider? Is it safe to come out to this person? Youre having to advocate for yourself in a really vulnerable situation.

Planned Parenthood in recent years has sought to address that problem. And it has made its clinics a magnet for thousands with few other options. Starting with Planned Parenthood of the Southern Finger Lakes, in upstate New York, a growing number of its health centers have become places where trans people can begin to transition medically, as well as get basic reproductive services. Its centers use a newer model for gender transitioning that gives the patient input on whether to start their transition, rather than turning the decision over entirely to a psychiatrist. Some clinics have staff with detailed knowledge of how to update drivers licenses, passports and social security cards to reflect someones name and gender.

Its this little oasis in the middle of nowhere, said Luca Maurer, the program director for Ithaca Colleges LGBT center. His center has a partnership with Planned Parenthood. Previously, he said, many trans students and locals would drive to Manhattan or Philadelphia, at least four hours each way, for prescriptions and the routine checkups that accompany gender transition. A handful even crossed the Canadian border for treatment in Toronto.

transgender
Luca Maurer, the program directors for Ithaca Colleges LGBT center, which partners with Planned Parenthood. Photograph: Jenn Foy Photography

If I didnt have them available to me, Im not sure what I would do, said Maurer, who is trans. It would be a crisis. And Im saying this as a person whose job it is to help others navigate healthcare systems.

Upstate New York is a microcosm of the hurdles facing transgender people when it comes to medical care. In 2015, LGBT healthcare providers surveyed local trans people and learned that 57% had run into barriers because there were not enough providers trained to address their needs. A full quarter had been turned away by one of their doctors. Without the Planned Parenthood in Ithaca, there would be limited places for several hundred trans patients to turn. The only local endocrinologist, who specializes in hormonal therapy, is not able to absorb so many new patients. And a local primary care doctor who offers transgender care is near capacity.

The need is not limited to transgender-specific care. Doctors and other healthcare providers frequently refuse to treat trans people for conditions having nothing to do with their gender identity what trans rights activists have sardonically termed trans broken arm syndrome.

In Florida, where Planned Parenthood recently began to offer transgender care at about a dozen of its health centers, some of the groups physicians are offering trans patients basic treatments for diabetes, high blood pressure and the common cold.

Gina Duncan, an advocate with Equality Florida, said Planned Parenthoods affiliates in Florida have been instrumental in pushing other providers to acquire the knowledge to care for trans patients. Where Planned Parenthood has filled such a huge gap, is its a known, reliable, quality source for healthcare, Duncan said.

In that region, too, Planned Parenthood is the major provider to trans people of hormone replacement therapy and general care.

Dinah, a trans woman who did not want her real name printed, used to drive 120 miles round-trip every time she needed basic blood work before the Planned Parenthood in her city began to offer hormone therapy.

We have patients who are grateful that they only have to drive two hours, said Dr Suzie Prabhakaran, the vice-president of medical services for Planned Parenthood of south-west and central Florida. The 11 health centers Prabhakaran oversees began offering hormone replacement therapy in October and are now treating 80 patients and counting. Four out of every five are starting hormone therapy for the first time.

As Planned Parenthood comes under fire, the prospect of possibly losing those services is throwing patients into turmoil.

Dinah says the care she has received at Planned Parenthood has been lifesaving. Recently, she worked up the courage to schedule her first physical in years. It was her first such exam since her transition, and during the breast cancer screening, she began to cry.

Its another thing that makes it real, she said. It meant that Im a woman and I have to be treated like one.

  • This article was amended on 2 March 2017 to correct a misspelling of Calvin Kasulkes last name.

Read more: https://www.theguardian.com/society/2017/mar/02/transgender-healthcare-planned-parenthood-funding

Tom Price confirmation hearing for health secretary: the key points

The longtime Obamacare critic slammed the current system but did not provide details on what a replacement might look like under Trump

Tom Price

Health and human services secretary

Background

Representative Tom Price has spent his political career as a penny-pinching, ideologically driven physician who has rarely crossed party lines on key votes. He is one of Donald Trumps most controversial cabinet picks, because of his hardline stances against abortion, same-sex marriage and the Affordable Care Act (ACA, also known as Obamacare). The medical community is split on Prices appointment.

Before his career in politics, Price was an orthopedic surgeon in a well-heeled suburb north of Atlanta, Georgia. His wife, Betty, also a doctor, serves as a Republican member of the Georgia house of representatives.

If confirmed, Price would head the sprawling $1.1tn Department of Health and Human Services, overseeing everything from food safety to epidemic crisis management. He would also be in charge of administering the countrys largest public insurance programs, which he has spent his career attempting to downsize.

This is Prices second hearing, and its the one that matters. Appearing before the finance committee, which holds the power to approve his nomination, Price was diplomatic and respectful, without revealing much about his views or what the new administrations healthcare plans will look like.

Key points and takeaways

Obamacare repeal plan: Price helped author Republicans most comprehensive ACA replacement plans, and Democrats will look for clues about what Republicans new plan will include (as well as its weaknesses).

A term that will likely be heard again and again is access. Where Democrats strived for all Americans to have insurance, Republican alternatives have strived for all Americans to have access to coverage. In other words, Republicans want people to have the option, but not the requirement, to buy insurance.

That imperils many of the ACAs most popular provisions, such as a guarantee that young adults can stay on their parents insurance until they are 26 years old, or a requirement that insurance be sold to people even if they have had previous illnesses.

Trump has also contradicted his nominee, promising insurance for everybody in an interview with the Washington Post.

During Tuesdays hearing, Senate Democrats repeatedly pressed Price on what the replacement plan for Obamacare would look like under Trump, but he declined to provide any specifics. Ohio senator Sherrod Brown asked if it was true that Price and Trump were working together on a plan, to be revealed after Prices confirmation. Its true that he said that, yes, Price said, to laughs from the room. After Brown asked if Trump lied, Price said, I have had conversations with the president about healthcare, yes.

Price, a longtime ACA critic, slammed the current healthcare system. Many individuals have coverage, they have a card, but they dont have any care … Its imperative we have a system that is accessible for every American, affordable for every American, he said, without providing any additional detail on what that might look like.

Stocks, docs and devices: In his first hearing, Price was pressed on his purchase of health stocks while he was a leading voice on health policy in the House of Representatives, and the subject is likely to come up again.

His most notable purchase was for an Australian company called Innate Immunotherapeutics, where he bought between $50,000 and $100,000 of stock at a discount(it is now worth around $500,000). The company holds no patents, but has one drug in development to treat an advanced form of multiple sclerosis. Its largest investor is the New York Republican congressman Chris Collins, who was part of Trumps transition team, and other investors are connected to Collins. The deal occurred during negotiations on the 21st Century Cures Act.

The former surgeon has advocated on behalf of laws that benefit doctors, including limits on medical malpractice suits.

Prices other investments include $15,000 of stock in Zimmer Biomet, a producer of joint replacement devices. It was purchased less than a week before he introduced the HIP Act, which would have delayed reforms that would have cost the device company money, though the legislation died in committee. An aide told CNN that Price was unaware of the transaction because a broker managed his account.

During Tuesdays hearing, Democratic senator Ron Wyden quizzed Price repeatedly on his Immunotherapeutics stocks, asking him if his purchases of stocks while sitting on committees responsible for healthcare policy shows bad judgment. Price responded that everything I did was above board, ethical, legal and transparent, noting that there wasnt any maliciousness involved in saying his stocks were worth between $50,000 and $100,000 when in reality they are worth nearly half a million dollars, as I thought it meant the time at which I purchased the stock.

Republicans jumped in to defend Prices financial investments. Senator Richard Burr of North Carolina noted that he believed the nominee made his financial disclosures public as asked and yet was getting criticized by the Democrats: Does it burn you that they want to hold you to a different standard? he asked. Price replied: We know whats going on here. And I understand. And as my wife tells me, I volunteered for this.

Tom
Tom Price, testifies on Capitol Hill in Washington, Tuesday 24 January. Photograph: Andrew Harnik/AP

Cuts to Medicare and Medicaid: Prices past proposals to replace the ACA have been radical.

He proposed changing Medicaid, a health program for the poor, into a block grant, something experts say and history shows would almost certainly precipitate cuts. He has advocated for privatizing Medicare, a public health program for the elderly. And he has voted against expanding public health programs that insure impoverished children.

Price has also advocated adding work requirements to Medicaid for able-bodied adults. Some states, such as vice-president Mike Pences home state of Indiana, proposed work requirements for Medicaid. The Obama administration blocked them.

At Tuesdays hearing, numerous senators questioned Price on Medicaid. After queries from Democrat Bob Menendez, Price said Medicaid was a vital service but one that has significant challenges, noting that one in three physicians who should have been accepting Medicaid would not do it.

McCaskill and other senators pressed Price on whether he was in favor of block grants, which give states a set amount of money to spend on Medicaid.

Im in favor of making certain Medicaid is a system that responds to patients, not the government, Price said. McCaskill continued on the topic later, noting that Price served as chairman of the budget committee and the 2017 budget pushed for block grants. You said over and over again that you favored block granting Medicaid … you cut Medicaid by a trillion dollars in your 2017 budget. And yet today you want to stand on some notion of whatever you guys do is fine. And thats just not reality, Congressman. Whats reality is youve been chosen for your beliefs and your beliefs are reflected by your budget that you wrote as chairman of the committee.

Price objected to the Washington Democratic senator Maria Cantwells suggestion that the administration is creating a war on Medicaid. I would respectfully, Senator, take issue with your description of a war on Medicaid, Price said. What we desire and want to do is make certain that Medicaid population is able to receive the highest quality care.

Controlling drug prices: Trump has advocated for foreign imports of prescription drugs and government negotiations with drug companies Price has voted against both.

Its another issue in which the president and Price find themselves on opposite sides. Allowing the federal government to negotiate drug prices through the Medicare program has typically been a Democratic platform, and its one that Democrats will push as good policy during Prices hearing.

During the hearing, Wyden asked Price about Trumps plan to lower the price of medicine through negotiation with drug companies, which Price has opposed in the past. Were committed to making certain that drug prices are able to be afforded by individuals, Price said. After a tense exchange with Wyden, he added: I think it is important to have the conversation and look at whether or not there is a better way to do that. If there is, then Im certainly open to it, Price said.

Womens healthcare: At every turn, Price has attempted to shut doors to abortion access. He voted in favor of the Pain-Capable Unborn Child Act, which would have banned abortion at 20 weeks.

Price is in favor of defunding Planned Parenthood, and introduced a bill to do so through the budget reconciliation process, which was vetoed by Obama last year.

A repeal of the ACA would have drastic impacts for women. Before the ACA went into effect, women paid more for insurance simply because they were women, according to the National Womens Law Center. Pregnancy was considered a pre-existing condition. The ACA made contraception available to women for no copay or prescription charge.

Asked about ensuring access to free contraception, Price said during the hearing: I think contraception is absolutely imperative for many, many women and the system that we ought to have in place is one that allows women to be able to purchase the kind of contraception they desire.

Menendez questioned Price on some dangerous health myths, including whether abortions cause breast cancer and whether vaccinations cause autism. Price responded by pointing to the science, which overwhelmingly says no. Menendez asked if Price would debunk false claims regarding public health, to which the nominee responded that he would do due diligence in providing factual public health information based on science.

Mazin Sidahmed contributed to this report

Read more: https://www.theguardian.com/us-news/2017/jan/24/tom-price-confirmation-hearing-live-key-points

Americans who crowdfund their health costs fear for future under Trump

Despite the benefits of Obamacare many still find themselves falling through the cracks of the health insurance system and things could be about to get worse

Before she goes to bed each night, Aldona Kudirka prays her daughter Maggie will still have health insurance in 2018. Her fears have only grown worse now that Donald Trump is officially in office.

Kudirkas family has been plagued by the issues that currently dog the US health insurance system and highlight the failures of Barack Obamas landmark health reform, the Affordable Care Act: Aldona and her husband own a small business and make too much money to qualify for subsidies meant to help cover high health insurance costs, but nor can they easily cover their $1,200 monthly premiums.

When Maggie, a dancer who trained at the Joffrey ballet school, was diagnosed with aggressive stage 4 breast cancer in June 2014 at age 23, they had to turn to family, friends and strangers on the internet to ask for $45,000 to help them pay for her treatment.

Turning to strangers on the internet to cover medical costs may seem drastic, but the Kudirkas and others like them are even more afraid of what will happen if Donald Trump successfully repeals Obamas health plan. I worry about it every day because we have a bunch of lunatics running the show in every house of government, Kudirka said.

In the wake of Trumps victory Republicans are aggressively pushing to repeal Obamacare, which has seen 20 million people gain health insurance coverage since it was enacted in 2010.

People
Maggie Kudirka: an internet appeal raise $45,000 to pay for her cancer treatment. Photograph: Courtesy of Maggie Kudirka

Obamacare is a complete and total disaster, Trump said last week. Its imploding as we sit.

Days before Trumps inauguration, partial repeal is already moving forward without any replacement healthcare plan agreed to, creating a murky picture of the future of US healthcare. Next week the Trump White House begins in earnest.

The uncertainty has led to anxiety for those who were already unable to afford medical costs and had turned to crowdfunding websites for help. Problems with the US health insurance system are prominently displayed on these sites, where at any moment, thousands of people are requesting thousands of dollars to help pay for cancer treatment, organ donations and other medical emergencies.

Crowdfunding site YouCaring said of its 14 categories, medical expenses is its most popular, making up 40% of all fundraisers on the site. More than 150,000 people have used YouCaring to help fund a medical procedure or expense, according to the site. And on the platform GoFundMe, Medical, Illness, and Healing is the most popular section. In 2014, $147m was raised on the site for medical costs, up from $6m in 2012.

Faced with a high deductible and procedures, like acupuncture, that were not covered by their insurance the Kudirka family felt they had no option but to ask strangers for help. Any money we raised just goes to our medical needs and whats best for my health, Maggie Kudirka said.

Now the family is worried about changes to the healthcare system that would further devastate the familys finances.

Because of Obamacare, Maggie has been able to stay on her parents health insurance until her 26th birthday this year and she qualifies for subsidies that dramatically cut the premiums on her individual healthcare plan. Obamacare also ensured that she cant be denied coverage, or forced to pay more for coverage, because her cancer is a pre-existing condition.

Trump has said he would like to keep parts of Obamacare, including the parental coverage until age 26 rule and the pre-existing coverage protection, but it is unclear whether or how Congress and Trump will agree such a plan.

Without the pre-existing conditions protection, 52.2 million people could lose access to health insurance, according to a Kaiser Family Foundation (KFF) report. And people with pre-existing conditions that are still allowed to get health insurance would probably have to pay more for coverage, the report said.

Stefon Alexander, a rapper known as P.O.S., was diagnosed with a kidney problem when he was 15 and as an adult experienced a health system where he could be denied coverage because of his pre-existing condition.

Just before Obamacare was introduced Alexander had lost his health insurance and his kidneys started to fail after he had stopped taking his medication. Obamacare gave Alexander access to affordable treatment through Medicare, a federal health insurance program for people aged 65 and older or who have certain disabilities.

People
Stefon Alexander, who also goes by his rapping name P.O.S, had his friends in the Doomtree rap collective to thank for raising funds for his medical expenses. Photograph: Nate Ryan/Doomtree

There were plenty of headaches and nightmares leading up to dialysis, but luckily with the Affordable Care Act I was able to get covered in time and do some dialysis, Alexander, who is now 35, said. But I still had some giant, giant bills getting into dialysis.

Thats when his friends, the members of rap collective Doomtree, turned to the internet to create a fundraiser for Alexander.

Before showing signs of kidney failure, he had spent his money recording an album, which he would earn back on tour. But when he got sick, he was faced with deciding to either struggle through the tour or go into serious debt because of the lost tour earnings.

More than 1,000 people donated money to the fundraiser, getting him nearly double the $25,000 goal his friends had set. I was able to keep up with bills for a really long time, I was able to not go on tour, he said.

Alexander continues to work his way out of medical debt and takes 26 pills a day to control his immune system so it doesnt reject his donated kidney. He is also paying bills on medical equipment he had collected during dialysis, including unused equipment that cant be returned but still needs to be paid for. Thats why my biggest fear right now is when the Affordable Care Act is repealed, all of a sudden my monthly bill for maintenance medication is going to cripple me, Alexander said.

Trump has said he does not want to change Medicare, but his nominee for health and human services secretary, Tom Price, refused to say whether he would avoid cuts to Medicare in a hearing on Wednesday.

Trump has also said his plan would be insurance for everybody, although a nonpartisan analysis by the Congressional Budget Office found that without a replacement, repealing Obamacare would cause 18 million people to lose their insurance in 2018. And without a substantive replacement, 32 million people would lose their insurance by 2030.

This projection is meaningless, as it takes into account no measures to replace the law nor actions that the incoming administration will take to revitalize the individual market that has been decimated by Obamacare, said AshLee Strong, a spokeswoman for the House speaker, Paul Ryan, a champion of the repeal.

But even those who have not been completely protected by Obamacare and looked for help to pay for medical costs online are wary of the Republicans unclear repeal plans.

Take Dennis Disbot, who was diagnosed with cancer two weeks before the due date of his first child. His wife went into labor the day the cancer was supposed to be removed and two years later, he is still in treatment. That treatment included chemotherapy, which destroys your immune system to slow the spread of cancerous cells, leaving patients vulnerable to ailments like the fever Disbot had as he spoke to the Guardian from the hospital.

People
Theodore Sungjin Disbot, Denis Disbot and Esther Disbot. Photograph: Courtesy of the Disbot family

He was covered by his employers health insurance when he was diagnosed, but paid directly for a family health insurance plan after he had to leave his job to fight cancer, which he said was a full-time job.

This did not cover all the costs associated with cancer treatment, so Disbots family created an online fundraiser seeking $75,000 to help pay for the cost of living in San Francisco, one of the most expensive places in the country; holistic treatments to complement his chemotherapy and stem cell treatments; and for things like sperm banking, which are not covered by insurance.

Despite the shortfall, Disbot is pleased with Obamacare.

The pre-existing conditions, thats huge. Having that set the market standard was really amazing, Disbot said. But it shouldnt be amazing, its a right healthcare is not a privilege, its a right, and our rights are at stake right now.

He said having cancer showed him how crippling it could be to have to deal with an unexpected medical challenge and that no one is guaranteed a long, healthy life.

Living to be 80 years old is not guaranteed, Disbot said. I totally expected to be old and in my rocking chair, chilling on a porch and looking out, getting through life unscathed and I was wrong.

He said that if he was well, he would be on the streets protesting against Obamacare repeal.

I think about my son, Disbot said. Sometimes its not a question of if a medical situation arises, its when.

Read more: https://www.theguardian.com/us-news/2017/jan/22/americans-who-crowdfund-their-health-costs-fear-for-future-under-trump